Please help! Don’t know what to do… respite care

[Brummiegirl82]

Bit of advice needed please: Parent with dementia (PWD) has advancing cognitive decline, can now only shuffle, is very frail, can’t easily get out of chairs and needs 24 hour care from Parent carer (PC). PC has been providing complete care, dressing, washing, toileting, for years with no break. PWD now increasingly believes PC is an intruder or is lying or has gone mad and is attacking them, and they become aggressive and violent. Often becoming upset for hours at night time, varying between having fairly normal conversations with visitors then turning on PC when they are alone. Now PC needs a small stay in a hospital and needs to recover, it is a day procedure but PC needs time to recover alone at home afterwards. I don’t think it will be safe for either of them to try to recover while PWD is also at home, so think a respite place would be beneficial for a short time. PC has privately told me they also want this. But PWD has a deep fear of being abandoned and put into care and will refuse all suggestions of this, and become aggressive if this is even mentioned. Added to this, we’d have to go through adult social care as they have no savings. Any kind of needs assessment or people asking about finances would trigger suspicion and anger in the PWD. I don’t know what to do… any ideas?

You have to contact adult social care. We had a similar situation except Parent Carer was taken in to hospital very suddenly by ambulance. I will warn you, you may have to fight. A neighbour sat with our PWD overnight and then the adult children were pretty much expected to do the care (despite having full time jobs and in the case of my dh, two children with additional needs.

PWD did end up in residential care full time when PC stated that they were going to move out if not as they could no longer cope with the violence.

What? Oh, that is so hard. So social care will just refuse to help? We were hoping just a few days in respite for PWD would help PC to recover, but it looks from your post like you had to step in and do the care yourself?

My understanding is that there can be quite a long wait for an adult social care assessment, so it may not happen immediately anyway. Obviously this may be area dependant - hopefully someone who knows more will be along soon.

You could also try your local mental health NHS Trust. They should have an older adults service that will include community and inpatient teams that can asses and support with some of the challenging behaviours and care needs.
Again, you may need to fight, but make it very clear the strain this is having on PC and the potential for harm to both parents if there is no support.

If there are no savings then yes you will need to go through social care.

if PWD becomes violent then that will recorded.

it’s likely given that the need is (presumably) for a few days social care will suggest that the adult children do it.

Just to add, there is a date set for the operation already, it’s next month, and the PC would be back in the house the same day of the operation, so would likely be disturbed at night time by PWD getting upset even if someone was there to look after PWD.

Call social work today and ask for an urgent care package referral and say you are concerned for the welfare of both parents at this point. It is not sustainable at all.

I used to be an adult care sw, we had lots of situations like this, sometimes this is how things come to a head and change what is an increasingly untenable situation. Ring social services, explain the urgency and ask for a care needs assessment for the PWD. They should prioritise it, use the phrase carer breakdown for PC, be clear that other family members can't help, as they will need to look at all options available before going to respite, for both financial reasons and wellbeing of PWD and PC. Also ask for carers assessment for PC.

The most important thing is to state clearly and firmly that there is nobody else in the family who can help. Full stop.

No maybe, no sharing the load, no possibles. Just state nobody, nothing. It sounds and feels awful, but it’s the only way to make sure that the LA don’t try and fob you off.

As your parents get older PC will find this role harder so it is a good idea to be “in the system” and start to transition to outside help.

The most important thing is to state clearly and firmly that there is nobody else in the family who can help. Full stop.

Absolutely this.

We were caught on the hop with it all being unplanned. The neighbour saw the ambulance arrive and went across to help. After that of course we were not going to leave PWD alone. It also didn't help that both adult children were very reluctant to say they would not help even though neither were in a position too. If you say you can pop round daily and cook a meal they will take that as being enough!

Pop round daily to cook a meal? PWD cannot be left alone even for a couple of minutes before they become agitated…

I know. Trying to get through to them that our PWS could not be left for 5 minutes and certainly not overnight was a challenge.

On another occasion fil was refusing to get into the ambulance despite being life threateningly ill because mil could not be left alone.

You need to act like you are heartless I'm afraid.

Can only speak for my local authority , but of course they won't refuse!. We never recommend family care of relatives with dementia who need personal care

Honestly, your PWD needs to be in a care home.

What PWD wants is no longer the issue, you and PC need to focus on what PWD needs.

Aside from the issue with surgery next month, there is no way in the world PC should be putting up with constant aggression and violence. It is not uncommon that some PWDs don't recognise family and think they are intruders, so Social Services should be familiar with this. The situation cannot be allowed to continue.

Please get in touch with Adult Social Services for your area asap. They need to visit urgently and do a needs assessment. It may be a struggle to get PWD moved to a care home, but that is what needs to happen for the safety of both parties.

The PWD also needs a mental health review. Contact the GP if not under mental health team.
Social services will also want a financial assessment done, do this asap.

We found Help the Aged very helpful when my FIL needed more care and ultimately residential care. They were also really good at making sure my MIL got the support she needed.

unfortunately you are at the stage where your priority is the wellbeing of your PC, if they fail any decisions will be so much harder.

good luck OP

My experience is that you can speak as clearly and firmly as you want but there is absolutely no guarantee that anyone will listen to you. And certainly not do anything. And I speak as a very forthright person.

Thanks for your responses. To be honest, the tales I have heard on here over the years about the way you are fobbed off by social services has made me very reluctant to contact them to ‘press the nuclear button’, but I think we have reached the point where it needs to happen. I have never heard PC express a wish for a break before, and now they have.

Does anyone have any tips for persuading PWD that a care home stay might be necessary or a way to get them to the home without them becoming incredibly upset?

Arrange a care home but tell them it's just for a few days.
They won't remember so you can carry on saying that.

It is time the PWD was in a care home, anyway. It's grossly unfair on the PC, especially as they age.

Our PWD was not consulted and yes, abandoned there where this was our situation (but there were personal funds in play so the practicalities were not quite as awful as they might have been). PC needed the surgery.

In the kindest way, the PWD has no idea what their best interests are any more. So you make decisions that give PC the best quality of life that they are able to have. I used to work in elderly care in the community, and saw too often the caring relative die before the person with dementia due to the level of burnout/constant stress. It's 24/7 with little sleep, and their own bodies/minds are aging too. It's no way to live.

You have to stop pandering to the dementia and look after the well

100% this. PC shouldn’t be having to cope alone if things are this bad.

OP, tell your PWD that PC has to go to hospital so PWD will be looked after somewhere else for a couple of days until PC is back. They won’t know or realise how long they’ve been there once they’re there.

@Brummiegirl82 don't attempt to persuade the PWD. They will never accept it, and it is not in their best interests for you to consult them. They do not have the capacity to make or accept that decision, they are frightened and confused, and family or Social Services need to make decisions on their behalf.

In terms of getting my mother physically to the care home, I told her she was going on a mini break in a guest house. That particular fiction may not work for your PWD but you may be able to think of something which will.

I hope either you or PC has LPA. And please emphasise to Social Services that PC is at risk from regular aggression and violence.

My mother was initially self funding, and I dreaded having to involve SS when her money ran out, but actually they were very kind and helpful.