Meeting on Thursday - self funder

[pippop1]

I've posted about this before but I'm just looking for reassurance.

On the 16th Jan my MIL is having a meeting with us OH and me (DIL) and a social worker in her own home to begin to make arrangements for her to go into care. My husband is her only child (he is in his late 50s and works full time but locally.)

She is nearly 90 and will be a self-funder - for a couple of years at least. Thank G-d we don't live with her but are 15 mins drive away.

She has very little insight into her dementia and believes that she runs her household (of one) and neither we nor the carers (3 half hour visits per day) do anything but she doesn't need any interference so that's OK then. She might admit she was slightly forgetful if you really pressed her. There are ways to prove things to her but these are not kind.

A year or so ago we wanted to her to go into respite so that we could take a two week holiday but she refused. We were told that she had enough capacity to do so we couldn't insist. Her son (my husband) has had POA activated for two years now.

Since then she has deteriorated for example:

1. sometimes doesn't know whose house she is living in (has lived there for 30 years)
2. has poor mobility with a bad hip but didn't have it operated on when told and now it's too late. Can barely walk even with frame - tends to use one stick and furniture to get around. There are three frames in the house to use.
3. refuses to go out - even to our house or fora nice drive, out to tea or anywhere.
4. needs great persuasion ( once to the extent of making her cry) to get her to a dentist when she had had toothache for weeks.
5. boiled a plastic kettle on a gas hob and melted it - no memory of doing this while the plastic was still melting on the hob (hob now disconnected)
6. fiddled with central heating boiler and called British Gas because it was not working a few times a month who came out to turn it back on. We had boiler changed (it was old anyway) and the controls are more concealed so (with the help of strong parcel tape) she doesn't fiddle
7. Was deliberately putting the latch down on the door so that the carers, using the keysafe, still couldn't get in. We sorted that one by having a special new lock put on. Latch can only be put on when door is open.
8. I have been finding more and more things in strange places eg. slipper in fridge, meat in cupboard, kettle base in fridge and so on.
9. Can barely manage the stairs but has always refused a stair lift and now would not know how to use one. she does have two banisters but likes to use one hand and a walking stick with handbag (oh the precious handbag) round her neck.
10. I think she can make a cup of tea and a sandwhich but I'm not certain.
11. Is on memory patches from the (useless) memory clinic who now say she need not come anymore as it is humiliting for her to do the tests. I have since found out that there is a copyright problem with the test and they are not really allowed to use it!

BUT she is fairly happy as she has no worries and no responsibilities. In contrast, my husband has had a flare up of his medical condition from (I believe) of the stress of it all.

So will the social worker, who is from a big charity that runs homes, day centres and provides the carers that she currently has, agree that some or all of the above are CLEAR indications that the person needs to be in care? She currently pays in full for the carers at the moment - via husband using POA - as she has funds. We tell her that her attendance allowance covers it all, if she asks, as she has always been very concerned about money.

I guess i just need to hope for a good social worker don't I?


Are there any other (true) matters that are particular triggers for a social worker to say that the person needs care fairly soon? For example if one of the ceiling fire alarms went off in her house she would not recognise it as such and therefore would not know what to do (i.e. to go outside). She is on her own for 22.5 hours per day.

It's not an emergency situation but we would like care to be sorted BEFORE a crisis hits. Sensible surely. I feel we have attempted to stave off one as long as possible.

 

[Nick99]

Hi pippop1
My FIL has the same as your MIL and a lot more besides but he point blank refuses to go into a care home. We have taken him to look round but he was like a 3 year old, sulking and rude, it was absolutely embarrassing. He has carers to make his tea and do some shopping and meals on wheels lunch time. SS did not want to know at all because he was self funding and we could not even get an assessment. His diagnoses was all done via the doctor.
As you probably know your MIL will be quite capable of agreeing one minute and changing her mind or forgetting about the decision the next. So, my advice is that everyone concerned needs to be 100% convinced that MIL wants to go into care. If she is forced it may lead to more tears, anger and frustration for everyone.
If you are in contact with a SW from a charity or the care home I don't think there is any danger of them not recommending a care home.
We have stopped raising the subject with FIL as it leads to ill feeling and anger. We realize he is not coping very well even with carers but we feel that altering the arrangements will only make things worse not better.

 

[pippop1]

Thanks for your speedy response.

OMG I think you have confirmed my worst fears! I think I can say with confidence that she would not change her mind about going into a care home but she would never, ever agree in the first place, while she could speak that is.

My husband's health comes first. Without our frequent "help" - shopping, house maintenance, hairdressing, health matters and that of carers she would be unable to manage anything for more than one day.

It's all going to be very difficult to have this meeting with MIL present the whole time and there is only one downstairs room. I've told my husband to say to the social worker that he wants to show her something in the garden so that they can go and talk in private and tell the truth. I hope that will help. In the carer's book they have written things like "found slipper in fridge and have reported to office". "Found crockery in freezer" so hopefully this well help.

 

[Anniewragby]

Like you we are self funding and had a meeting with a SW last week - a county council one though. Her main reason for supporting our decision to move my parents into a care home was that they were wandering at night and thus putting themselves in danger( falls and going outside). She also asked if we had ever discussed what their views would be on going into care and fortunately we can answer honestly that they used to express the view that they did not want us to look after them. As they were already in the home she asked if they were happy to stay there - they basically said yes so all is well. Seems to be that it all depends on what questions are put and how they are phrased. Asking someone with dementia if they want to be at home isn't going to help as we all know there is only one answer to that ( although non of us know where that home is.....)Asking if you want to be warm and comfortable and well looked after however.........
All I can do is wish you luck.

 

[ITBookworm]

I think another point that you can make to the SW is that MIL is only "managing" at the moment because of her son's and your help (whether she acknowledges that or not). Due to your husband's current health problems you are no longer able to continue to do this and as such the options are a care home or increased carers. Even if MIL "pays" for more carers it isn't likely to cover everything you do without still leaving her at risk of harm. It is the "risk of harm" bit that should be a trigger for SS to recommend a care home.

Good luck.

 

[Witzend]

Thanks for your speedy response.

OMG I think you have confirmed my worst fears! I think I can say with confidence that she would not change her mind about going into a care home but she would never, ever agree in the first place, while she could speak that is.

My husband's health comes first. Without our frequent "help" - shopping, house maintenance, hairdressing, health matters and that of carers she would be unable to manage anything for more than one day.

It's all going to be very difficult to have this meeting with MIL present the whole time and there is only one downstairs room. I've told my husband to say to the social worker that he wants to show her something in the garden so that they can go and talk in private and tell the truth. I hope that will help. In the carer's book they have written things like "found slipper in fridge and have reported to office". "Found crockery in freezer" so hopefully this well help.

Do you actually need the OK from a SW, who let's face it, will not know your MIL's capabilities (or not) nearly as well as you do.

We had not involved SS at all with my self-funded mother, and by the time she needed 24/7 care (TBH it was way overdue) we found the right home and arranged it all ourselves. I think there was some sort of 'tick-box' meeting with a SW, arranged by GP, but it was just a pleasant formality, and we certainly wouldn't have put up with anybody who didn't know her telling us what was best for her.
My mother would never in a million years have agreed to go into a CH, but like your MIL she had absolutely no insight and simply wasn't aware that she could no longer even make herself a cup of tea, wasn't washing, etc. To her, there was nothing wrong with her.

I do hope the meeting goes well, but if there is any doubt over the outcome I think you will have to make it crystal clear to the SW that you are no longer able to support your MIL as you have been doing. Though since she is self funded I guess there less likely to be a disagreement over the need for the sort of 24/7 care and supervision a CH will provide.

 

[kindle]

My Father is currently self funding and my brother chose and arranged the CH so SS were not involved with that decision. I think they only need to be involved when funding is required. Mum, at that time was in hospital after a fall but Father believed he could look after himself! No so! I told him he was going to a hotel for a short while, a holiday, till Mum was a bit better. He seemed to accept that a bit better. Maybe try that approach with your MIL.

 

[Aquamanda]

Yes, I don't understand why social services have to give the approval for her to go into a CH. If she is self funded, then isn't it up to you under the POA to arrange it. As they won't have any financial input, I think they cannot decide what you as a family feel is best. Or is it that your MIL will be so resistant to the proposal that you feel that you need social services to say that you are making the right decision and so you can arrange it under the POA?

 

[clareglen]

You just need to insist she goes into respite or whatever you decide. As my GP told me, be firm. I've got used with doing it now but it was hard to turn around that parent/child relationship. Are you sure it is a social worker from the charitable home or just someone from the home doing an assessment, as they have to, before they take someone so they can understand their needs. I need the respite for my mum. On the advice of her old age psychiatry doc I contacted social services who did a verbal assessment with me over the phone & sent a health & social care co-ordinator. Mum was having a bad day the day of the visit - yey! H&SC woman said we were heading for a crisis & persuaded mum that she needed respite. However, because we are self-funding they don't want anything to do with it. They rang 2 days before Christmas to see if I'd got respite arranged - had to ring round all the homes myself - as they wanted to close the case. I have got her booked in, very few homes where we live do bookable respite, with the people she goes to daycare once a week. I now insist/force her to go to daycare & I've told her she's going into respite when we're on hol. As I'm a cancer patient, I lay it on thick & tell her if she doesn't go to daycare/respite I will die. Having said that my medical team have said I won't get better if I don't get her into respite so it's not that big a lie. It's just classic carer's syndrome.

 

[dottyd]

My mum was similar to yours but then she became a wanderer and no one could keep her safe.

Your mil's hip problems will probably prevent that but if she is a self funder you can go and look at homes and fill in the forms.

That's what a sw who was leaving the profession advised me to do. It's good advice because you are then ahead of the crisis that is going to happen, because it will happen.

She's reached a marvelous old age and now it's time for her to sit back and let someone take care of her.

My spinster great aunt put herself into a care home. She had all her marbles, when I asked her why ....she gave this reply.....because I don't want to look after myself any more.

She was a marvelous inspirational lady, had been a matron of a maternity hospital in her youth. Sadly a family feud preventedme from spending more time with her till the end of her life. Huge regret. She could have taught me a thing or two.

 

[Witzend]

My mum was similar to yours
My spinster great aunt put herself into a care home. She had all her marbles, when I asked her why ....she gave this reply.....because I don't want to look after myself any more.

She was a marvelous inspirational lady, had been a matron of a maternity hospital in her youth. Sadly a family feud preventedme from spending more time with her till the end of her life. Huge regret. She could have taught me a thing or two.

There was a lady in my FIL's first lovely care home who was only in her 60s and had no dementia. She had put herself there not. long after her husband died since she did not want to be bothered with the maintenance and worry of running a house, not to mention shopping, cooking, cleaning, etc. She seemed to be out much of the time and thoroughly enjoying herself.

I don't think I'd like it, not at such a young age, but it takes all sorts and it certainly suited her.

 

[Spiro]

Yes, I don't understand why social services have to give the approval for her to go into a CH. If she is self funded, then isn't it up to you under the POA to arrange it. As they won't have any financial input, I think they cannot decide what you as a family feel is best.

Sorry to be the harbinger of doom, but in some cases they can.

In our area some of the homes have a contract with social services, therefore you can only access them - POA and self funding or not - without SS doing an assessment and then referring you. Further enquiries revealed that one of these homes only has one respite bed!

It pays to ring round and check whether you can deal directly with the homes, before going to look at them. We are self funding, but I cannot access some these homes for love nor money, without SS input.

It's a post code lottery.

 

[Witzend]

Sorry to be the harbinger of doom, but in some cases they can.

In our area some of the homes have a contract with social services, therefore you can only access them - POA and self funding or not - without SS doing an assessment and then referring you. Further enquiries revealed that one of these homes only has one respite bed!

It pays to ring round and check whether you can deal directly with the homes, before going to look at them. We are self funding, but I cannot access some these homes for love nor money, without SS input.

It is a post code lottery and it can be a very time consuming process.

I think this was the case with my mother's CH, where I am pretty sure quite a few of the residents are not self funded. We had explained to the manager that we had never involved SS since we had just about been able to manage. (I did not add that my mother would have had a pink fit at the idea of any SW poking her nose in! Like many of her generation she saw SS as needed only by the feckless and improvident).

It is over 6 years ago now so I forget the details, but as I recall the manager said no problem, they needed an 'official' referral, but it would be a formality. And it was.

 

[pippop1]

I probably didn't make it clear enough and I apologise. The social worker is supplied by this very big charity that owns and runs many homes, day care centres and many other services including those for Youth all over the UK. They have a big head office in Golders Green in London. So yes, nothing to do with Council social services but they still have to assess her and then the GP will be involved I imagine?

Husband and I have written a 25 point list of reasons why she is unsafe at home now and the current situation and will give it to the social worker so can avoid saying too much to upset MIL.

I don't know if my husband's POA will be able to overide what will undoubtedly be MIL's stated wishes i.e. not to even have a one day trial at a care home. If she says no and everyone else says yes then would they have to section her. That would be terrible.

 

[Witzend]

I probably didn't make it clear enough and I apologise. The social worker is supplied by this very big charity that owns and runs many homes, day care centres and many other services including those for Youth all over the UK. They have a big head office in Golders Green in London. So yes, nothing to do with Council social services but they still have to assess her and then the GP will be involved I imagine?

Husband and I have written a 25 point list of reasons why she is unsafe at home now and the current situation and will give it to the social worker so can avoid saying too much to upset MIL.

I don't know if my husband's POA will be able to overide what will undoubtedly be MIL's stated wishes i.e. not to even have a one day trial at a care home. If she says no and everyone else says yes then would they have to section her. That would be terrible.

I think this might be the same org that runs my mother's CH - it's a non-profit org beginning with A. We had explained that she would never agree to go into the CH, although she was very bad by then, and to be honest without masses of support would have been living in chaotic squalor. But she simply wasn't safe to be left alone at all any more, and on top of that was ringing my poor brother constantly - I mean up to 30 times in one hour - and the strain was getting to him badly.

The assessment was in the form of a pleasant "visit' from whoever it was, and I don't remember them asking her bluntly, if at all, whether she was happy to go into the CH. She would only have said no, and then what? I am sure it must happen very often that people who are in urgent need of 24/7 care cannot accept that there is anything wrong with them, and would say no if anyone asked them if they were willing to go into a CH. I am sure whoever you see will be used to this sort of situation and will handle it tactfully. I do hope your worries will be needless.

 

[pippop1]

Thank you. I feel somewhat reassured now. It's not the same organisation as it begins with J, but probably the same sort of thing.

I've bought some extra nice biscuits to take to MIL's house for the meeting.

I can usually only buy my MIL "individually wrapped" biscuits and cakes (such as KitKats) as the see-through biscuit box ends up in some very strange places with the lid always off (freezer, under sink with cleaning materials, in random drawers and so on) so getting the wrapped ones gives them a fighting chance of surviving intact before being eaten.

 

[pippop1]

So we had the meeting and MIL was a little strange.

When husband and I arrived she was trying to remove a blanket that she was sitting on, whilst on a chair, from underneath her and literally screaming as we attempted to gently help to pull it out from under her. She was also saying "where am I, what house is this, how am I here" and so on. Very distressed.

When the social worker arrived (ten mins later) she was so much improved! She knew her house, she said her hip was painful but she could live with it and so on. Even more amazing she was asked to get up and walk across the room with the frame. She got up in a way I haven't seen her do for 5 years - no screeching and painful noises - and walked with confidence and speed. Husband and I were so shocked. Made us look really stupid when saying her mobility was so poor that she could hardly walk.

However MIL couldn't tell the SW a phone number that she would call in an emergency "There are lots of people I could call". When told 999 she said "Oh, I didn't realise you meant that kind of emergency".

She was also asked to think about what she would like to do if she couldn't manage at home and she said it wasn't relevant as she did everything so no need to think about it. Said she was independent except for her shopping.

SW said you do have support such as your son and DIL and carers. "Carers do nothing and don't come much" she said. They come 3 times per day.

The upshot of the meeting was that the carers and us and social worker would monitor her for two months (I got that tip here - give an end date) and SW would organise a pendant alarm (can't see her complying) and we will see how it goes. I was very disappointed.

SW hadn't read all the notes we had written so I asked some questions like do you cook for yourself ("Ha, Ha of course I do). Do you use the oven, microwave or hob. She agreed that she didn't use the oven or the microwave but did use the hob. The hob has been cut off for over two years. Also she said she did all her household bills, housework and so on and this is also not true at all. The social worker said that she seemed to be managing and she asked husband to sign a form so that she could talk to MIL's GP.

I left the meeting v upset with another two months of stress but this morning received by email the relevant forms for admission into the home we want her to go to. Looks like the SW did "get it"!

 

[fullmoon]

So pleased that your getting the required result after what appeared a disappointing meeting. I think experience social workers understand dementia sufferers often have no awareness of their condition. Hope the move happens soon for all your sakes x

 

[cragmaid]

The number of times I sat behind my Mum in meetings nodding or shaking my head where she couldn't see. The reams of notes I would type up, only for her to contradict every point when asked about it. I'm sure, at times, the " authorities" thought I just wanted to get rid of Mum, until the time came when she dropped the key behind the front door and the carer waiting to enter had to phone me to come down and let her in. By then Mum was virtually blind and would fall down at the drop of a hat. Then they " got it".
Well done you, at least things are moving in the right direction, even if there are a couple of months to go.

 

[pippop1]

Thank you. MIL should have been on the stage! I feel that things are moving in the right direction. Phew.