Stepdad has advanced dementia -Mum needs urgent help

[Georgina57]

I have come to this forum as I have hit a brick wall.

My Stepdad is now in the advanced stages of dementia but still active in the sense he is fidgety, anxious, moves around a lot. My poor mum is 65years old and only getting 1-2 hours sleep a night as he will not settle in bed. I have videos to share to show this.

He is beyond res bite and care homes as we have been to numerous now in Manchester, and all we get told is, we do not have the staff to care for his needs and we are sent packing. Our social worker is not very proactive nor compassionate to my mothers desperate cries for help.

If I am not careful, I will lose both of them to soon -all because people will not help me!!

I spent 3 hours driving round calling in and out of care homes to see if they would take my step dad and it was no, no, no.

As a daughter, I work full time yet I spend most of my day calling people, chatting on forums, speaking to doctors to try and get them help. Its frustrating that all I get told is "Google help, call care homes, see what your doctors says". How about: "Im so sorry your mother and step dad are suffering, here is a list of places in Manchester that will accept advanced dementia patients"

He needs full time residency not only for his health but also my mothers. She has him by her side 24/7, dressing him, washing him, taking him to the toilet. Its not on, she needs help.

He even had a seizure and had to be resuscitated on the bedroom floor a few days ago, yet after checks at the hospital -he was sent home!!!!

Why are people not helping us -surely there are people in our positions.

Ive already been given links to websites, helplines and I've googled care homes in Manchester. I need face to face or over the phone advice. Please I am desperate if anyone can help??

 

[Kjn]

Welcome to the forum firstly
Someone will be along to provide phone numbers and helplines which I don't have.
However I rang age uk many times for help with dads situation and were very helpful.

You don't say why the homes you have visited were unsuitable or their reasons to not take your stepdad.
Unfortunately there are a shortage of places so that won't help.

In my dads case he was aggressive , mobile and wanting to get out of the house ll.it's a long story but when in hospital social services assessed him as requiring emi residential care where there were more staff capable of managing his needs, due to huge waiting lists he ended up in hospital 7mths in which time his needs changed and is now in a nursing home for dementia without challenging needs.

Has he been assessed for his care needs for a home?
Would he be self funding or local authority? Have you have a finance assessment.
If SS have done these they should provide you with a list of homes .
Is he on medication from gp or psychiatrist for his behaviour ?

Sorry for the questions but it may give us more info to help you. X

 

[Georgina57]

Thank you for getting back to me.

The care homes say his dementia is to advanced and that due to staff shortages they were unable to take him. I even had one home say they do not take dementia patients even though they are listed on several websites as doing so. We found a lovely home with one room to spare, but after receiving his assessment, they declined to take him -again for the reasons stated. Its frustrating, where is he supposed to go.

He has been assessed
Care will be authority funded -assessment completed
SS just said "Just give some local homes a call"
He has medication which was re-assessd last week -but has no impact. Again doctors have just sent them on their way. I wish I was able to attend the appointments as I would not leave until I have help, but my mum takes what they say as the final offer so she just leaves.

He is deemed challenging which I think is what the issue is. Ive told my mum to call the SS this morning and plead with them to provide more information on suitable homes, as the ones we have tried are clearly not suitable.

 

[Oh Knickers]

Hi,

Sorry to hear you are having such a tough time in getting help. It does feel an endless journey.

Firstly, insist on speaking to the senior SW (Social Worker) rather than the SW you have been allocated. The terms you need to use are 'vulnerable adult' and for your mum 'carer breakdown'. Should that not work then contact the Chair of your local council and explain your situation and ask, gently, for guidance. It would also be worth contacting your step-dad's GP and explaining the situation as a back-up. Reading other posts, is that SS (Social Services) is underfunded and is only coping with firefighting. Back to the old - the squeaky hinge gets the oil.

Who has POA (Power of Attorney)? If you do you need to look into step-dad's finances and see whether he is self-funding. Also, whether he is in receipt of AA (Attendance Allowance.

However, should you step-dad be self-funding I'm afraid it may be left to you to do the leg work. Your local council will be able to supply you with a book of all the local care homes and should indicate whether they are EMI. I have also found searching online useful using this: https://www.carehome.co.uk/ and putting in the location.

When I researched care homes for mother the question I asked what would happen when her money ran out? I was told she would then moved to the council rate (councils buy a lot of care and get bulk-buy rates) or that that particular home did not deal with the council. I preferred the council rate ones.

What would be worth your while is contacting the organisations below. They have a lot of local information and will be able to guide you. Scroll down the first page and put in you your mum's postcode. The local contact number will come up.

Alzheimers Society
https://www.alzheimers.org.uk/

Age UK
http://www.ageuk.org.uk/

Good luck. You sound at the end of your tether.

 

[cragmaid]

I've just cut and pasted the Az Soc helpline numbers from Cat's post... Thanks Cat x.

Our helpline is very good if you feel the need to talk this through

You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Give them a ring and ask for some advice. I know it's not much help but it sounds like you need to a) look for an EMI home and b) definitely get back on to the SS and ask for their help. Sadly, in this process, it's usually a case of naggers get the most help, provided, of course, that you nag un-agressively.... otherwise they'll hang up on you like they did once on me.!!

Good luck.x

 

[Georgina57]

That is very helpful thank you!!

Ive already called the helplines, Age UK etc and I just go round in circles. They have offered care homes/day care which we gave a go but again sadly not suitable.

My step dad has no assets therefore we are kindly relying on funded support. Even if we self funded, my mother is a pensioner and I can only offer so much of my salary, but quotes range for £500-£1000 a week. Even a loan would not cover his care. My mother is in rented accommodation therefore its not as though she can sell her home to fund his care.

I am happy to nag as he needs support and I'm scared my mum will have a stroke or a heart attack with the stress of all this. I do as much as I can without trying to let it impact my full time job but its heart breaking that my hands are tied.

 

[cragmaid]

Write to the Director of your Social Services Department...... your civic centre will give you the name and address. Advise them of the failings of your Social Worker ( giving their name if you have it) and tell them that if you do not receive acceptable assiatance you will be going to the Media and your MP, as their department has a "Duty of Care towards a Vulnerable Adult". Ask/take your Mum to the GP and ask them to intervene too.

 

[Kjn]

I found a lot of homes advertise online as taking dementia patients but in reality they want /or can cope with very basic needs.
Dementia centres or emi units as they were or often still called cater more for the challenging where a lot of the residents tend to be aggressive , shouting, mobile etc etc.

Speak to SS management to get the names of homes which match your dads needs.
They can't fob you off if they are to be the funders, they should be giving you a choice of ones they approve and can manage your dads needs rather then sending you off to search.

 

[Shedrech]

hi Georgina57
welcome to TP
I don't understand how your stepdad was discharged without a care package being put in place - or does he already have home care visits? - if not, that's one place to start so that your mum has some of the strain taken from her - that would mean going back to the Local Authority Adult Services who have done the care needs assessment and telling them home care visits are needed urgently or your stepdad will end up back in hospital as a failed discharge and your mum will undergo carer's breakdown
the phrases you have been given may get attention ie they are both 'vulnerable adults' and 'at risk', your mum from physical breakdown and your stepdad because of the high level of his care needs due to the dementia, and as the LA have the 'duty of care' you will hold them responsible for any harm that comes to either of them
I believe that once the LA have undertaken a care needs assessment and the financial assessment confirms that they will fund the care, they have a responsibility under the Care Act to provide at least one offer of a placement without asking for top-up payments, so I don't understand how they can simply tell the family to get on with this - the down side to this is that the placement may not be close to family and may not be exactly what you would choose yourselves

I tried to look on the Manchester City Council's website (which I found hard to navigate) for information - link here
http://search3.openobjects.com/kb5/manchester/directory/results.page?directorychannel=4-5
and found these 2 recommendations

Admiral Nurse Team
Admiral Nurses are specialist dementia nurses, working in the community, with family carers and supporters of people with dementia. There are 3 nurses covering the City of Manchester and they are employed by the Manchester Mental Health Trust and are supported by the national charity… 0161 882 2053,

- there was also a link to an e-mail address

Alzheimer's Society: Dementia Support Team
The Dementia support service provides one-to-one support to people with dementia, carers and family members. The service provides information and practical support to help them understand more about dementia, and gives support enabling people to live well with dementia. The service aims to ensure that… Vicky McCall 0161 962 4769,

you say

My step dad has no assets therefore we are kindly relying on funded support

.
there seems to be very little kindness shown in your dealings with the LA, and actually your stepdad has a right to their services, having no doubt worked all his adult life so contributing for himself and his family

I hesitate to suggest this, but I do wonder what would happen should you have to call the LA and say that your mum has broken down and you have had to take her in, which leaves your stepdad alone in the marital home with no possibility of family providing any of his care

do have a chat with one of the folk on the AS helpline

sorry there's so little we all can actually do to help

best wishes

 

[Oh Knickers]

Excellent advice fromShedrech here.

As an addendum, you should not be paying top-ups for your stepdad's care. It should solely be on his finances and pensions.