Elderly mother with dementia and mobility problems

[Pollyanna8844]

Hi, long story alert. My mum is 82 and over the last 3 years suffered lots of broken bones, last summer a broken hip followed by a broken knee in the autumn. I live 100 miles away and have young children. My sister lives close by, is married, but doesn't have children. My dad insisted my mum came home from hospital rather than go to a Community Hospital whilst she had to remain immobile for 12 weeks so my sister moved in to help look after her as my dad couldn't manage. Just as my sister felt able to leave my parents for a couple of days at a time my dad became suddenly very ill with dementia (didn't recognise my mum or the house as his wife and house). My sister felt unable to leave my dad on his own because he went downhill rapidly. It was all very traumatic for her and my mum and my dad was violent towards her, sadly the dementia was caused by heart disease and he died in just over a month, at the beginning of the year. Therefore, my sister was needed more than ever to look after mum. I get up when I can to give her a break but the strain is making her ill, plus she and her husband are not able to live together which is not fair on them. Mum has now been diagnosed with vascular dementia and she is being so horrible to my sister, shouting and screaming at her and tonight mum had a fall, luckily did not break anything, but would not let my sister help her up. A neighbour came in to help and my mum kept screaming horrible things about my sister. Eventually, after calling 111 for help, the paramedics got mum upstairs (took over an hour) with her screaming at them all the time. My sister is in a dreadful state, just wants to go home and live with her husband. We have been trying to sort out a care package, but the EPOA won't be finalised until late May, so mum would have to sign off on it and sign the cheques. My mum has to pay for all her care as she has savings, but she thinks she doesn't need looking after and won't spend the money (is convinced she doesn't have any despite me going over it with her to reassure her when dad died). She has been assessed by Social Services. My question is if my sister walked out to avoid having a breakdown, what would happen? Would social services help us? We tried to get help when my dad was ill as my sister came close to breaking point then and all the people I spoke to were lovely and seemed helpful but nothing happened and my sister was left to cope. What happens to elderly people if they have no children? Please don't think I want to abandon my mum, I just don't want my sister to be ill to and I want mum cared for.

[coribells]

Does your mothers have a social worker/care manager.? Your sister should contact them and say that she is no longer able to support as her needs have changes. She should also ask for a carers assessment . Her needs /willingness are meant to be taken into account when designing a package of care. Is respite care a possibility ?

[coribells]

Also this site has lots of good information www.firststopcareadvice.org.uk
They also have a helpline.

[IwishIwasmoreorganised]

How advanced is her dementia?
Does she have the ability to make her own decisions (weighing up pros and cons and giving a reasoned decision even if it's not the one you would choose)?
If not she may lack the mental capacity to make her own decisions and decisions can be made in her best interests - this is usually done by a team of experts (Drs, nurses. OT's, physio's - whichever professionals are involved in her care) and the persons family.
There should be some sort of emergency care service in her area - the council is usually a good first port of call.
Good luck - it sounds very stressful for all concerned.
Xx

[boysrock]

Your poor sister.

Its difficult times know where to start. Does your sister need something sorted today or is she happy to wait?

Your sister can ask for emergency respite. Either she does this by going to the gp tomorrow and laying it on thick that she can no longer cope with your mum and asking them to make the referral for emergency respite. Or she rings social services and asks for same. But she had to state that she can no longer cope and that your mums behaviour is such that she can no longer cope.

I apologise for how harsh that sounds but unfortunately that is the only way to get them to sit up and take notice.

The advantages of respite is that it does gives you all a break for a couple of weeks and decide how best to care for your mum whether this be at home or in 24 hour care if you feel that more appropriate.

Please dont feel guilty whatever you both decide it is incredibly hard and stressful to look after relatives who have dementia for 24/7. Unfortunately unless you state clearly that you can no longer cope social services take their time. And people do not want to have to say that they can no longer care because it is their loved one.

[TheChaoGoesMu]

Social services won't step in unless they know your sister is not going to be there to pick up the pieces. I would contact ssd and tell them your mum needs an emergency assessment (tomorrow) and a package of care put in place (tomorrow). If they don't action it, go through the complaints procedure and also contact your mums local MP to advocate on hers and your sisters behalf. If ssd have already done an assessment then they are purposely dragging their feet. Those who shout the loudest are more likely to get what they want. Start shouting.

[Pollyanna8844]

Thank you for your responses everyone. I know that my parents' GP just wouldn't come near him when he was ill, just kept saying 'speak to his CPN'. When dad was ill she told the GP she couldn't cope, I told social services but nothing actually happened until too late and we got letters for appointments after he died.

Mum has been assessed, so I think she has a designated social worker, I am going to ring them tomorrow to see what they can do. It is just not knowing what you can ask for as it seems no one volunteers information, you have to know the right questions to ask and we are clearly not asking the right questions/saying the right things to get the help we need.

What is emergency respite?

I'm not sure how advanced, her personality is certainly changing, this is not her normal behaviour, but could be put down to grief? She is doing strange things and has put the grill on to cook something that was supposed to be defrosting and forgot about it. Luckily, my sister was in the house and discovered it. She was being horrible to ambulance staff tonight and that is so out of character. She 'remembers' things that have never actually happened and all the things we have done t help keep her in her home she blames my BIL for and says nasty stuff about him and things he has done. He is in poor help and has been so helpful and supportive but she has these 'memories' and when you disagree she just says 'I don't tell lies'. However, she can get washed and dressed and eat etc. and does the washing up. She definitely has very definite ideas about what she does and doesn't want to do. So I think she probably does have mental capacity, but am nervous about thought of her living on her own

[Pollyanna8844]

mum's local MP is David Cameron...

[boysrock]

Don't hold out much hope on the mp front then!

Emergency respite is where residential care is arranged for approximately 2 weeks. It gives time for the appropriate care package to be put in place or whether everyone thinks that residential care is the way forward.

Generally residential care is deemed appropriate when the person is unsafe to be left alone.

Infection can cause confused behaviour and falls as well. I would suggest requesting a gp visit tomorrow, on the grounds that she is more confused and falling and has had the paramedics out. I would also suggest that the next time paramedics are called out to insist that she be taken to AEd for assessment, there she will be screened ask them to rule out urine infection. OT and physio are usually based in AED if you feel her mobility has deteriorated.

If your mum has dementia I'm assuming she has been assessed by a psychiatrist? If so CPN's. Ask them to visit and be ruthlessly hones about what is happening, stressing that you and you sister can no longer cope.hth

[3littlefrogs]

The key words are: "carer breakdown is imminent".

Unfortunately the longer you and your sister cope, the longer you will be left to get on with it.

The people who walk away, leaving social services to pick up the pieces, are the ones who get the help. It is fire fighting all the way because resources are so scarce.

[WynkenBlynkenandNod]

Oh dear, how difficult for everyone I agree the 3littlefrogs. Someone needs to tell Social Services today that your sister is 'withdrawing care due to imminent carer breakdown' and that with your Mother's diagnosis of VD and recent behaviour she is a 'vulnerable adult' and if anything happens to her it will be down to them.

It does sound very harsh but it is definitely a case of he who shouts the loudest. It might be worth posting inthe Alzheimer's society's forum as there are a number of people who have been through it. It was reading old threads there that gave me the courage to put in writing that I was withdrawing care due to carer breakdown and suddenly a care package materialised - this was a bit before Dementia diagnosis. Sorry you'd all going through this.

[Pollyanna8844]

Hi, busy day on phone yesterday! Turns out the extra visits were ordered but just didn't happen. Spoke to her key worker and because she didn't hear from my sister she assumed everything was ok. Hoping everything goes smoothly. Having to sacrifice Easter with my 5 & 9-year-old sons to go up and look after mum to give sister a rest whilst everything settles down. Sister now feels she will be able to just pop and visit mum rather than living with her so fingers crossed there are no more dramas.