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I woud hate my children to be in the same position.....

(61 Posts)
Silverlining47 Sun 22-Apr-18 10:28:31

My MiL is 96, lives in a carehome and has dementia and is almost blind and deaf. Otherwise she has no actual illness. She has always been loved by her family. However my husband and I are over 70 and living on our savings.
I have worked hard all my life and was a single mother for over 20 years (second marriage in my 50s). Now we are paying for MiL's care as she has no money left and I am worried that this is using the savings that had been put aside for our own care in old age.
I woud hate my children to be in the same position but a friend's mother has just had her 103rd birthday and we'd have nothing left by then!
On Gransnet we often talk about when we should stop supporting our children and think about our own future but I don't see any solution to this situation.
I know there is no answer or advice but I wonder if other people are dealing with the same issue.

NanaandGrampy Sun 22-Apr-18 10:35:03

Silverlining , I cant offer any advice but can totally understand your worry.

I hope you don’t mind me asking but what would happen if you stopped paying ( or even couldn’t pay)? I’ve not been in this position but I just wondered .

M0nica Sun 22-Apr-18 10:41:51

Silverlining there is no legal compulsion to pay for your MiL's care. However Social Services are skilled at emotional blackmail that leads to people 'volunteering' to make additional payments by suggesting to then that not making the payments would demonstrate how little they really care for their parents and by describing how their relation will suffer as a result of their unwillingness to pay.

If that has happened to you then screw all your moral courage to the sticking point and tell Social Services that you can no longer make the payments, not from lack of love but because you cannot afford it.

Mamissimo Sun 22-Apr-18 10:42:22

Silver I really feel for you because funding care is a nightmare but if your MiL has exhausted her own funds she is entitled to financial support to pay for her care. You need your own money or else your DC will be facing the same problem in the future. CAB or the Alzheimer’s Society can help you to get some uplift.

kittylester Sun 22-Apr-18 10:44:53

Agree with all the above.

Or try AgeUk. If your mother in law has no money it is not your responsibility to pay her fees.

Luckygirl Sun 22-Apr-18 10:53:10

You do NOT have to pay for MIL's care - no way! Talk to social services right now before you fritter away any more of your precious and much-needed savings.

I used to work in this field as a SW - you do NOT have to pay!!!

Nannarose Sun 22-Apr-18 10:56:05

I agree that, unless there has been some specific arrangement between her and your husband, then you need to talk to the care home and Social Services.
However, I wonder if the 'blackmail' is around the fact that she might need to be moved if she went on to council funding?
However, I do think it makes sense to do your own costings around your own lives, otherwise you may, as you point out, perpetuate the problem. It may be helpful to think 'When MiL was fit and well, what would she have wanted us to do?'

paddyann Sun 22-Apr-18 10:58:01

No LEGAL resposibility but some feel a moral resposibility.If we cant care for our elderly in our own homes we want to make sure they are cared for as best they can be.
I understand that mum was looked after by us.We had a teenager and a 5 year old when dad died so having her live with us wouldn't have worked .I still felt I needed to make sure she was well looked after.My mum only lived for 12 years after dad died so I dont know how we would have managed for another 10or 20 years and my sympathy goes out to you.It must be very difficult to reconsider your MIL 's care.Make sure you get as much information as possible before making a decision and try not to stress a ssquite often theres an answer there its just that no one has taken the time to point it out to us .

Panache Sun 22-Apr-18 11:04:38

Feeling very much for you Silverlining47,a very difficult position indeed.
Sadly I have no advice though I am sure there will be many GN`s whom can happily point you in the right direction.
This simply cannot continue as it is for sure.

Silverlining47 Sun 22-Apr-18 11:35:30

Thank you for your very supportive answers. Nannarose, you are right about the resistance to move her to another home. My husband and his sister (who is not well off) are the sole supporters and share the costs but neither want to destabiliser her any more by moving her.
As so often there are multiple layers to situations. In this case the local council run homes have a poor reputation (one was highlighted last year for abuse to the elderly) and others, like a possible phsychiatric home (her dementia is worsening) is a long distance away.
My husband and my SiL want her to stay where she there is another 'layer' to my anxiety...... I have no influence on their decision and, in all honesty, I would probably feel the same if it was my mother.

Silverlining47 Sun 22-Apr-18 11:38:03

Sp. psychiatric

Silverlining47 Sun 22-Apr-18 11:51:12

Nanaandbgrampy, if we just stopped paying I expect she would be sent to a council carehome. We have the funds to pay at the moment but ironically one of my husband's mantras has always been ' It's easier to start caring/treating/paying for something than knowing when to stop'. This is a case in point. How many months or years are ahead of us......or it could all end tomorrow.

NanaandGrampy Sun 22-Apr-18 12:09:46

I understand Silverlining - what a complicated situation.

I feel very sorry for you, the situation and the lack of clear cut way to proceed. I hope there is a way forward .

mcem Sun 22-Apr-18 12:10:33

Surely the local council are contributing. Are you saying you're paying top-up fees and feel you cannot now afford to continue?
You must speak to SW dept/Age UK and make absolutely sure she is receiving all she's entitled to have.
An acquaintance is having care at home, 24/7 and self-funded, which is very expensive but SW do still make a significant contribution.

Silverlining47 Sun 22-Apr-18 12:19:14

mcem, yes, we are paying top up fees at the moment. Thanks for your repy.

grannyactivist Sun 22-Apr-18 13:15:57

Silverlining I do understand your problem; I'm the Chaplain at a local (outstanding) Care Home and relatives, understandably, worry about moving loved ones and disrupting their lives when the money runs out. There are no easy answers I'm afraid, but do check with Age UK to ensure that everyone is getting the maximum allowances - sometimes there are ways to squeeze a little extra out of the pot. Occasionally a move to a slightly less expensive room in the same home is possible and doesn't cause too much stress for the resident.
My own family were in a situation some years ago when my husband's gran was in a very expensive care home and the money from the sale of her house was about to run out. We too agreed to fund her care so as not to have to move her, but she died just a couple of months before we came to that point.

kittylester Sun 22-Apr-18 13:47:39

If I were you I would consult the Alzheimer's Society, AgeUk and the CAB. I have heard of cases where people have refused to pay the top up and nothing happens. There is a huge argument that someone in your MIL'sposition should not be moved even if you stop paying.

You could also try looking at the Alzheimer's Society Talking Point Forum to see what others have done in your situation. Other gners have said how helpful the site is.

I'll post a link!

kittylester Sun 22-Apr-18 13:50:39

The link to talking point

Luckygirl Sun 22-Apr-18 14:01:18

Ah - so it is the top-up you are paying.

You are not obliged to pay this, but I understand why you feel you have to.

However there are ways around it. As ga says a smaller room might be an option; or indeed refusing to continue to pay the top-up if it is compromising your financial stability. Care home places are not plentiful and they may have nowhere else to send her.

I am going to sound very hard-hearted here, so forgive me. Just as you would very definitely not want your children placed in this position, then it is highly likely that your MIL, when of sound mind, would have felt the same.

I have been in the position of having to move several people with dementia from one home to another, and it does cause disruption, but this can be minimised by being around regularly at the time of the move and immediately after. TBH, some folk simply had no idea that they were somewhere else. It does of course depend on her stage of illness.

If I were you I would go and look at some cheaper homes - have a really good look; go back several times. My parents (at separate time) went to the cheapest option - not because we did not care; but because it was the best for them - it suited their needs much better than many of the so-called "specialist" homes. It was less formal and clinical and they loved it.

Does MIL own a property which will be sold in the fullness of time? The LA can put a legal charge on this that means they have first call on the funds when she dies - the LA then recoups what they have spent.

My strongest advice to anyone at the beginning of this process would be to say you cannot afford to pay a top-up.

Silverlining47 Sun 22-Apr-18 15:19:20

Kittylester and Luckygirl thank you so much for sparing the time to answer my post.
You are absolutely right about what MiL would (or wouldn't) have wanted. She was a sweet person who didn't like any unnecesary attention or fuss or 'being a nuisance' to anyone.
Kitty thank you for the link to the Alzheimers online forum.....that's very interesting.

Nitpick48 Mon 23-Apr-18 10:18:44

There are some brilliant charity-run mum was in a care home run by a local blind society. (You didn’t need to be blind to qualify) We were never asked to pay for her care.

Barmeyoldbat Mon 23-Apr-18 10:21:57

Monica is right, you do not have to pay. I am in the same situation but with a daughter, I have PoA and so pay her contribution from her money. I had a visit for her financial assessment, at the end of it he passes me the form and asked me to sign on the dotted line. I said I need to read it first and his reply was it’s just that you will pay her fees. But when I read it it stated that I would be responsible for her fees. I just passes it back without signing. Her care has continue in the usual way. My advice is don’t pay. However hard it is.

Luckygirl Mon 23-Apr-18 10:26:50

That is appalling!!!

gillybob Mon 23-Apr-18 10:33:47

But when I read it it stated that I would be responsible for her fees. I just passes it back without signing

That's shocking Barmeyoldbat How bloody underhand can you get ?

I remember being conned into taking responsibility for my late grandmas final rent, electricity, gas accounts after she died by naively agreeing to them sending the bills to my address (addressed to me). I hadn't realised that housing benefit stopped the moment someone passed away and so agreed without thinking. I know a very different scale to what you could have potentially "signed up for" but disgusting none the less.

Nannymarg53 Mon 23-Apr-18 10:40:33

Dementia IS a physical health problem not a mental health. Google NHS Continuing Health Care and also visit a site called Care To Be Different. You should NOT be paying for her care. Do some research then be prepared for a fight! Hope this helps? 😊