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Also New to Carers forum - Carers UK Forum

Also New to Carers forum

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Hi, I am having a wee nightmare and I'm not sure where to even start. My sister of 66 is my mum's (90) full time carer 24/7 but is not registered as such. They just wont do it, I'm not sure I know enough details to do it for her. I have tried reasoning, pleading and leaving them to it but then there is always an emergency I just can't ignore. Mum had been in A&E a lot over the past year, sometimes twice in 48 hrs. The social care team were alerted but she sent all help away once she was 'OK'ish! She has full mental capability. I can not convince mum that the help is for sister as well as her. Sister has not left her side for over 30yrs, has never left home and they just don't go out, very isolated. It all came to a head last week, sister had to go in hospital and called me and brother to go sit with mum, we stayed up all night trying to work her long list of medication out - thankfully my nephew had a spreadsheet I referred to. Turns out sister needs big operation and I keep telling them, mum will need to go somewhere for her to be looked after 24/7, me and brother can't manage it all. I have family and he has a broken neck and sleeping on the settee is not an option for 6 weeks or so, nor is he supposed to be doing much. I am the only driver and the constant journey from my home in another county and lack of sleep, means I have hurt my back and mentally, I am beside myself. I don't want to make her go, I don't want to make her cry, I want her to be safe. None of us have facilities in our homes for her to stay (she has a stannah lift, walkin shower and commode at home), she insists she can cope but is so wobbly and it is usually at night when her COPD gets worse and she needs her nebuliser or inhalers. She sometimes gets night cramps and screams out, she gets reflux and could not get a spoon of gaviscon from bottle to mouth for the shaking hands. True, she can do somethings herself but she can't open doors, drawers, if she drops something (pills) then she can't get them. She can't walk with her wheelie frame and carry things. She can't cook or make a hot drink. She would never get out of a 2 storey house in case of a fire, she takes her hearing aid out at night. I was so desperate as to what will happen whilst sister was in hospital last week, I contacted a care home right at the back of her house, my thought that at least if she was local, she would find it less scary. They were lovely and told me more about useful contacts but said sister has to kick it off, they currently have spaces though it would have to be funded by local authority (mum has been council tenant for at least 60+ yrs). So I spoke to sister in hospital and said she absolutely has to let GP and hospital know that mum can not cope on her own, I made sure sisters surgeon knows, she said GP needs to know. They let sister out for a couple of days whilst they decide where she will be operated on, I took her to GP on way home and made surgery aware, receptionist said she would have to make a call to GP once she knows date she will go in. What more can I do - I am the bad guy in all this and get very upset when I leave them. I wish they lived nearer to me or at least the same county.
Sue, you're not the bad guy at all.

Your sister wants to you step in and do what she does for your mum, while she herself is in hospital.

But you can't, and won't. You have already got too much on your plate, and coming to live in your mum's house for the duration not just of your sister's operation, but of her recuperation as well, is just not possible.

I definitely think you - not your sister - should see your mum's GP, or speak to them on the phone, and lay out the situation - ie, that while your sister is in hospital, and afterwards, even when she is back home recuperating, your mum will EITHER need a LOT of carers coming in (and quite frankly I don't think that will work if she needs someone with her 24x7), or else she needs to go - temporarily - into what sounds like a perfectly good care home right on her doorstep!

Sue, people who are being cared for AND family carers who care for them -especially with the 'devotion your sister has shown - do become completely 'irrational' when the set up is threatened. They can't mentally accept that 'something else' has to happen - ie, in this case, that your mum needs to have respite care in a care home, until your sister can take over her care again (though see below.)

You will have to be firm about this. Tell the GP that YOU cannot take your sister's place, and that the care home nearby is willing and suitable to have your mum, and then tell the GP you are personally bowing out of the situation, and won't hve any more to do with it.

While your sister thinks she can 'persuade' you to move in and take her place, she will go on and on at you. You don't have to justify youre refusal, you just say 'Sis, while you re in hospital and afterwards, mum needs to be in the best place, and that is the care home nearby. She'll have a little holiday there, while you are in hospital, and then afterwards while you're getting your strength back. Then she can com home to you again.'

As for paying for it- if your mum has over £23,500 in savings, she will have to pay for any care she gets - she may also have to pay for respite care if she has less than that, but owns her own home. However, whatever she has to pay is WELL worth it because otherwise your sister can't have her operation, can she?!

Longer term, however, I'm wondering whether this isn't time for a proper sit down conversation, first with your husband and own family, and then with your sister (after her op) and then with your mum as well. Because much as I'm sure you will all want that your sister can continue to look after her mum, as she wants to do, it could be that she just won't be fit enough - and your mum may, yes, have to stay in residential care, or go back in at some point...'for ever'.

You also, as a family, really have to think through the financial implications of your mum's last years. Questions to answer urgently include - if your mum rents her property, can your sister inherit the lease when she dies, or moves into a residential home? If your mum owns her own property, and has to stay in residential care, will the house have to be sold to pay for it, and will your sister be made homeless?

It's a grim truth, shown by all too many folk on this forum, that taking on the role of caring can, when the person you are caring for dies, make you end up homeless and broke. Not good!
Sue, none of us can live the life we want. At the very least, there are choices to be made about where to live, jobs, schools etc - compromises always have to be made.

Whatever compromises your mum and your sister have made with each other, to keep the old arrangement going, are not binding on you. They were not your choices. No one involved you in the decision making. The problem both of them have is that they like the arrangement and now it's being threatened by things outside their control. So they will concentrate their efforts on piling on the pressure at the weakest point, to ensure things go their way.

But you're not a piece of equipment they can buy to tide over a problem. You're a human being with your own life. There is no shame in saying 'no, I have my own life to lead and there are alternative reasonable short-term options.' They may be under stress, but it actually won't help to place you under extreme stress, as well. Where's the sense in that? To say nothing of the knock on stresses it could give your partner/children (if you have any). It can't be better to have 4 people stressed out over this, rather than two.

You'd be best able to offer help if your mum is in temporary care while your sister has the chance to recover. Otherwise, your sister's recovery might be hindered by caring for your mum, and that might mean the care she can offer is diminished. That's the road to them both ending up ill.
Sue, welcome to the forum.
This is all incredibly sad. Here on the forum we encourage people to exchange the word guilt for sad. To concentrate on NEEDS, not WANTS.

Your mum needs residential care. She probably needed it a long time ago, but your sister propped her up, perhaps for too long. It's unlikely your sister will ever be able to cope for mum again. You can't, so that means she needs residential care, like it or not.

However, I see a problem looming which you might not have envisaged.

You need to find out as much as possible about mum's tenancy agreement with the council. Did your dad once live there? If so, the house might have to go back to the council, with your sister having no right to remain there. I know this is a bombshell you will hate me for today, but it must be a consideration.

For the moment, mum needs either emergency care at home, or residential care. There is no alternative.

Does she have any mental health problems. Any named disabilities, or just generally old and frail?