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Advise on member of family - Carers UK Forum

Advise on member of family

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Hi All
I have just came across this site, so first time user, looking for some advise if possible please.

Just a few months ago me, my partner & our children moved in with my partners mother. This was due to her husband dying last year & with her being 'older', mid 70s, ex cancer sufferer, numerous operations she has become weak & unable to complete tasks . So we moved in to help her with all the basic daily routines, cooking, cleaning, lifting,shopping, medication.

Although there was signs before we clearly noticed Alisons mother struggling day in day out, especially with losing balance & has had numerous falls, also coughing a lot during meals, cut a long story short. Alisons mother has now been in hospital for over a month with numerous issues, this is all down to her swallowing, when she eats we have now found out the food goes into her lungs - this has caused

pneumonia - which she is over
infections - which she is over
severe memory loss due to infections

The outcome of this is a decision that needs to be made by the family,

risk feed ( which can cause the above to happen constantly)
P.E.G (tube fed into stomach)
given 24 hour care home service

The peg option is the reason im writing today because its ourselves who will be trained on how to do this, so it would be us caring for Alisons mother.

Has anyone ever done the above? Do you think Alisons mother should be cared for 24/7

Please bare in mind we have young 3 children also living with us, is it to be hard to balance everything out, days with the children etc. We are full time workers.

eating/drinkin infront of Alisons mother
toilet issues can happen within a second.

There is a lot of guilt now on us also, as we havnt planned for all this to happen,

What do you feel is the best option for all?
DEFINITELY residential care. Can I suggest that first you ask Google about "NHS Continuing Healthcare Assessment Checklist". Here you will find a list, in various sections, of ailments which the NHS consider so serious that they will fund care, if your score over various sections is high enough. Unfortunately, it's a postcode lottery, but be sure to ask the hospital to complete a checklist as soon as possible. You should be involved in the assessment. Balance/falling issues, and PEG feeding are both issues which should be included as high needs. Do NOT UNDER ANY CIRCUMSTANCES agree to have mum home until this whole process has been done, despite any promises given about doing things later etc. etc.
Next, you need to consider where you are living. Is it mum's own home? If so, there is a possibility that this will not be considered in any financial assessment as to sell it would make you homeless. It is absolutely vital that you seek advice on this subject. Start by asking the Carers UK helpline about this. Email them if the phone line is busy, but make this your top priority.
Is your wife an only child? Has mum given her Power of Attorney? Both are vital.
Next, start looking for a good nursing home in your area. Look at the Care Quality Commission website which lists all the NURSING homes in your area. A PEG fed patient needs nursing, not just care. The nearer the better, then you can pop in to see mum whenever you want, so she won't feel abandoned.
By now, you will have gathered that I've been down this road myself, it's very, very tough emotionally. You must focus on what mum NEEDS not what she or you want. It would help if you both sat down and made a needs list, anything and everything you do for her.
Come back to the forum whenever you like, many of us arrive here during a crisis, there's lots of help and advice available.
Hi Craig
The thing is, Home Nursing Care is going to happen sooner or later, unless MIL has not very long to live. If it's a matter of weeks you could have her at home again but it's going to be an awful disruption to your lives and that of the children. She's going to need full time nursing by someone. Maybe your wife feels that she must do this, (give up work), with perhaps help from visiting carers and nurses, but it will take its toll on her and on you all.
My feeling is that a move from hospital into a Nursing Home would be better now, rather than coming home and then finding she has to go anyway because it's all too much. Don't forget you will have disrupted nights too. Not good while working full time or for growing children.
You need to look up and make yourself familiar with the Continuous Healthcare Checklist. This is a 'score sheet' completed by medical professionals, and if MIL scores enough points, then her Care Home fees will be paid by NH.
You must make sure the hospital gets that done. In the meantime start investigating the Nursing Homes near you. Look them up on the QCC website and visit yourself. NH will only cover the fees to a certain level and you might feel that a more expensive Home is better for MIL. In which case you will have to top up the fees yourself.
When it comes to care at home, then who pays depends on how much MIL has in savings. If it is over £23,500.00 she pays herself. Under then the LC will start contributing. You will need a big care package, possibly more than a 'Needs Assessment' will allow you. Then MIL will have to pay for any extra care she needs.
Now if Mum moves into a Nursing Home and has not got CHC then her assets will be taken into consideration. Does she own the house?
If you click on the 'Help and Advice' button at the top of this page and then on the grey rectangles, you will find a lot of helpful information, a lot of which will apply to you. (Not all).
I'm sure other people on here will be giving you all sorts of information and advice, so I won't go on and on.
Don't make any decisions until you feel that you know all the options and do not allow the hospital to send MIL back home until there is a full care package in place.
Many thanks for the replies,both have given me some information to work with.
In answer to some of the questions,
My partner owns the house her parents,now only mother lives in, so in that sense we should be fine.
No she is not an only child, which makes the decision a 3 way split but Alison has already taken over as the only LPA, so she has all the say on money etc as she sensed this could happen.

My partner obviously feels very guilty in even having to make the choice because it's something her mum always asked never to happen. But at the end of the day it's only for her mothers best needs.
Craig, you are in a really good position then, well done! If mum has under £23,500 (roughly) in savings, then the local authority will be partly, or fully responsible for her finances. HOWEVER many local authorities do not play by the rules as far as financial contributions are concerned. Because I know the rules inside out, I made the local authority repay mum over £8,000!!!
The LA will probably say that they have a maximum fee figure which they will fund. The rules state that the home must respect mum's human rights, so it has to be close enough for family to visit. So if there is not a home within a reasonable distance at the LA figure which actually has a vacancy, then the LA MUST fund a more expensive home. By law, mum is not allowed to pay any "top up" unless it's to fund a nicer bedroom with a better view. If the :A asks you for a contribution, just say, and keep saying, however much the pressure mounts up, that you CANNOT make a contribution as you have a young family to support. DO NOT UNDER ANY CIRCUMSTANCES SIGN ANYTHING!!! This is just my rough guide, be sure to ask Carers UK's helpline for full details if you find that the LA are "trying it on". The main differences between more expensive and cheaper homes are in the quality of the furnishings and fittings, some are like a hotel with nursing. However, the basic nursing care etc. remains the same.
Hi again Craig,
I know how your partner feels, I really do, because my Mum has been in a Nursing Home since the end of April and she too, never ever wanted to go. I'd been looking after Mum for 9 years, with increasing help from care teams, but in the end her needs became too great for me to cope with and your MIL is already at that point. It's not ideal. My Mum is confused and not completely happy but it's saved my health and sanity, even though I am still in almost daily attendance. I know she has the nursing care she needs, day and night.
There comes a time when what someone needs, what you all need, is not what you would ideally desire. Head has to rule over heart in the best interests of all concerned. I say again, that it would be better for MIL if she went from a hospital situation to a Home without an intervening time at home. It will, at the very least give you breathing space while she grows stronger, (or weaker) and if it really, really, doesn't suit, then your partner and you have time to plan and equip your home for full time nursing care and take the option to bring her home anyway.
Eileen has explained it really well.
I'd suggest that you don't tell mum she's going to the home forever, just "until she gets a bit stronger" or something similar.
Hi, may I suggest you take a look at the Macmillan cancer community forum, as there will be bound to be specialist sub-forums on the impact of stomach/oesophageal cancer (I take it this is your MIL's cancer???)(or similar), because I know that PEG feeding features strongly on such specialist forums. The folk there can give you hands on experience about what the practicalities are like when this has to happen.

If it truly is a time for residential care, as it rather sounds, sadly, then do bear in mind that, if her health permits, it might be possible for your MIL to come and visit you regularly, eg, every other weekend or something like that, so she is sort of like a 'weekly boarder' at the nursing home. You and your wife might be able to cope with that, but not full time caring.

I'm afraid I agree that it would be better if she moved straight from hospital to the care home, not back to her own home, and definitely that it is 'just for a while' etc etc, like an old fashioned 'convalescent' home.
Firstly, please do not feel guilty.
There is no call for that.
I learned early in life that there is no point lamenting the fact that others are more knowledgeable and better equipped than myself: that's why my car goes into the garage for an annual service, and why I use the carwash rather than bother with cleaning it myself. You cannot "be all things to all men".
Caring at the heavy end is not for everyone, and the children must always come first.
I faced a similar situation myself some fifteen years ago, with my aged father in law becoming increasingly needy, and it all worked out for the best. Once the care needs become too great, a busy and stressful family home, whatever the good intentions, is not, and never can be, a substitute for a well-run, calm and professional nursing home or hospice. And you can still care very much by delegating the task to others, whom you have carefully selected, and whom you monitor closely but discreetly with regular but unannounced visits.
Hi All

I was speaking to my partner last night & I shown her all these replies I had, so first of all thanks from her for the time & advise you have given us.. There are all points that never entered our heads as its obviously hard to focus at present. Really hits home that's 'its not what is wanted, its what is needed'.

She also pointed out to me that although originally the house was bought & paid for, due to other circumstances the property was re-mortgaged & now has her mothers name on the mortgage... does this effect any of the above information?

The cancer was in a few places & she had stents put in place..

I also agree that if it comes to a care home then coming home first is a bad idea, it should be straight from hospital to care.

Also as the MIL is unstable, lack of weight etc.. she is unable to 'pull herself up' in bed and move back up if she slides down the bed.. this can cause her to fall out of bed & then is unable to get back on.

Our concerns are if we do go out as a family, she is unable to come which to me then triggers a switch in MIL head to think
'now they have gone out I can move about without them saying No whilst here'
she tries to stand, falls due to lack of balance & movement & causes more damage to her body if not fatal.

I do feel something needs to be put in transit asap though, a meeting with the doctor & family needs to be had & honest opinions put out.