Need some advice for home care needs support

reck_uk

I’m looking for some advice on what I can do to help my Mum who’s been struggling recently (although she’ll never admit it) looking after my Dad.

My Dad has numerous and complicated medical issues with the most serious being Progressive supranuclear palsy. This has meant Dad is now partially blind and not able to see things below him and his balance is not great, in addition to this his neck is arched forward when he walks so he can’t see in front of him. This means it’s very easy for him to fall over and basically means he’s confined to the house unless he goes for a short walk with Mum while she holds on to him.

The other side to this are the mental issues he has. He gets confused, forgets what he’s saying and is not able to do much himself. Over the last few months he’s been getting up in the middle of the night thinking it’s the morning and been going to get breakfast, getting clothes out the wardrobe and basically making a lot of noise waking Mum up. Recently he’s also started to fall out the bed meaning my Mum’s been having to help him back into bed and make sure he’s ok.

All of this has meant that my Mums daily life is now looking after my Dad 24/7 and taking him to regular hospital appointments all round the area every couple of weeks or so. Add to the normal every day things like looking after the house, garden, sorting out issues with the car etc it means she now has to do nearly everything herself and has full days just trying to keep on top of everything. All of this is being made much worse as she’s now hardly getting any sleep. With Dad waking her up very early most mornings it means she absolutely shattered and trying to handle everything while really tired. She’s one of those people that once woken up can’t go back to sleep, unlike my Dad

My Mums not one for asking for help, even to the detriment to her health, but I can see what a drain all this is having on her. Me and my siblings help out as much as possible but with all of us working full time and families of our own we’re often not available to help although we do what we can.

The point of all this is to see if anyone can advise if there’s any sort of assistance my Mum could to help care for my Dad. She’s 74 herself and with my Dads needs trying to do all this at her age is getting too much for her and she could really do with some kind of help. I’m not sure exactly what or even what’s available but if anyone can point me in the right direction of who I can talk to I can see what options are available.

Apologies for such a long post but I thought the background was important to explain the situation.

reck_uk

Is a care act assessment from the local authority a suitable next step?

RAS

Does anyone have LPA for dad, and mum? If not, that needs arranging urgently.

Can one of you cover for mum whilst she goes to the GP about the massive stress, sleep deprivation she is suffering? A way of alerting them to the fact that dad needs an assessment.

Suffolksue

PSP Association 

Tel no 0300 011 0122 
also the specialist neurology nurse and your local hospice 

Brie

Suffolksue said:

PSP Association 

Tel no 0300 011 0122 
also the specialist neurology nurse and your local hospice 

Sometimes these dedicated associations are the best thing to know how to make life easier for both those who are ill and those looking after them.  They'll also have the network into the local medical establishment to get all the appliances that will make life easier - like bed rails or grab rails.

If it's not already in place get them to help with applying for attendance allowance for dad.  That little extra each week might mean a carer can come in and mom can have time to relax, maybe the carer can help with personal needs, or even hoover the place while mom takes a nap.  

My FiL was a stubborn old boot and in his late 80s had a fall, increased lack of mobility, deafness, blindness and MiL who was already 90 was insisting she could take of him by herself.  It's a dreadful situation to have to watch and we were fortunate to be close enough to be able to be on call when there were emergencies at 3 am.  

OutdoorQueen

Once you’ve applied and been awarded attendance allowance, consider applying for the Council Tax reduction for (horrible phrase, but the one they use) severe mental impairment?   This could free up some money to pay for support or respite.  Look on their district council web page for details how to claim. 

https://www.moneysavingexpert.com/reclaim/severe-mental-impairment-dementia-council-tax-rebate/

elsien

https://www.ageuk.org.uk/information-advice/care/arranging-care/care-needs-assessment/

So you would need to ask for an assessment for your dad of his needs, but also one for your mum (with her consent, obviously) as his carer. These can be done as a joint assessment if appropriate and the referral has to be made through your local authority/social services. There will be a wait for an assessment because of the pressure that local authorities are under so the sooner it goes in the better. 

Any support offered will be means tested. 

Has he been to his GP for a memory assessment? He can also asked to be referred for an OT assessment with regards to his mobility/falls risk, or if your mother goes with him to the appointment she can ask on his behalf if he’s not able to do that for himself.

But she does need to be clear on what the difficulties are however hard is for her to ask for help. Because in our current economic climate those who don’t speak up get overlooked until things go pear- shaped. 

It would probably help her if she starts keeping a diary now about the difficulties and about his sleep patterns because the tendency is to underplay it unless it’s clearly recorded. That evidence would also be useful for any future assessments. 

elsien

And as always with the LPA, just to point out again that people not only have to have capacity to make one, they have to be willing to do so as well. 

Which is not always the case.  You can’t “get” a power of attorney,  it has to be freely given. 

elsien

Alternatively, if you don’t want to go through the whole social services thing because your parents would be self funding although they can sometimes point in the right direction for services) you can look at sourcing services for yourself. 

So the local authority won’t pay for a cleaner, but your parents might have enough money to do that and take some of that stress away from your mum. Ditto a gardener. 

Or you could look to pay a private carer to come in as suggested above to give your mum some respite. If you’re going through an agency, look on the CQC website  the latest reports, although some of them are very out of date. Or via word of mouth. 

https://www.cqc.org.uk/care-services

I’d still suggest the assessment now just to clarify what the needs are even if the local authority then steps away and leaves you to sort things out yourselves.

reck_uk

Thanks very much to everyone who's posted, there's some really useful information here. It sounds like a care needs assessment and a call to the PSP Association would be a good place to start.

I had no idea about the council tax rebate so i'll mention that to my Mum straight away, thanks for the info.

We already have LPA for both parents and they get attendance allowance.