I'm worried about my Mam and Dad

Savvy_Sue

Perhaps prefaced by "I know you think I am still just your little girl, but I am actually a grown up, running my own house, holding down a job and looking after your grandchildren, so please take notice of what I say because I love you and Mum very much and do not like to see either of you in this state. BUT, if you keep on ...." etc.

Glad attendance allowance has been mentioned, it is not means tested and was fairly easy for Mum and Dad to get, with far fewer problems than this. Although it's frustrating at the moment that you feel Dad has to pay for this care because he has saved, it does give you a LOT more options.

lilmissreading

Becles wrote: »

I've noticed that and I don't think he's being deliberately awkward. For example, he bursts into tears when he's happy, so when I gave him his Fathers Day present he started crying. It was a picture and sometimes he randomly cries when he looks at it because he likes it!

The term for what he is experiencing might be 'emotional lability.' It occurs in 10-20% of stroke survivors.

I think it is reasonable to sit with your dad and try to explain the consequences as others have suggested. However the impact of the stroke might mean he has trouble understanding what you are explaining, trouble retaining it or trouble putting it into real life as it were. There are strategies that can work but it is hard. You need the care agency to be on board with any suggestions as well as your mum as consistency is key in managing these situations.

Try to get the name and number of the occupational therapist (lady who is dealing with the mental side). If you are lucky they can advise on who to contact on your to do list. They would know if there is a neuropsychologist who can advise.

If the timings and professionalism of your care agency are poor, I would definitely feed this back to them and let them know you are looking for other providers. Put it in writing and send a copy to social services. Your father would likely come under the heading of 'vunerable adult' so social services should know. They should also have a list of recommended are providers and if these people are on their list they need feedback. you are right - no point with contacting the hospital social worker.

The other thing I first came to post (!) is about power of attorney. You and your family might want to think about whether your parents want to set one up for finances and/or health for him or your mum. It is a hassle - it is a couple of hundred up front to register I think and a disheartening number of pages to complete. However once you have it registered if there are difficulties for either in making a decision in these areas, a registered POA means that it must smoother, less expensive and quicker process to help make the decisions that the person with POA makes on their behalf. Registering it doesn't mean it comes into force - means it owuld be ready to go should someone (usually a medic) advise that capacity to manage these decisions has been lost.

Hopefully things will start coming together for all of you - best of British and all that - any other questions hopefully the combined MSE brain can help.

dandelionclock30

You'll definatley get Attendance Allowance for your Dad and your mum may be eligable for Carers Allowance.
Get the Social worker or someone from the CAB help you fill the forms in as they are quite long and complex. The Social Worker needs to do a full financial assessment for you as well.

GwylimT

My wife had an accident eight years ago that left her partially paralysed, she was similar with the carers but not quite as clingy, when I knew she had mentally recovered a bit more I stopped letting her get her way. When the caret arrived she had to get up, when the caret was there she had to try to go to the toilet. Do not use the hoist unless you know what you are doing, you could hurt yourself or your husband. You need to tell your husband exactly how you feel.

I know how distressing this must be, but there is a big difference between doing some necessary care for a partner and becoming their skivvy.

Advice for mum.

*Robin*

Nobody has yet mentioned the Red Cross, who have many useful aids available for loan at short notice (they ask for a donation when the item are returned).
While waiting for OT, SS et al to mobilise, maybe you could borrow a wheelchair ramp / suitable chair from the RC, OP, so that at least Dad could get into the garden or for short trips out?

msb5262

Hi OP,
I am working as a home carer at the moment and my company is insistent that anyone using a hoist MUST have received training. Also a hoist should NEVER be used by just one person. I think the care company you are using is not showing much respect for health and safety...
I suspect your dad is feeling self-conscious about having very personal things done for him by the carers, hence his attitude of wanting your mum to do it. Obviously this can't work for either of them, so a long chat with his social worker and perhaps the manager of the care agency might be of use.
Stay strong for your mum and of course your dad, you can help them both through this difficult situation.
Please don't lose heart, your dad will probably start to recover physically quite quickly with all the physio etc he is getting...and most care workers pride themselves on looking after people in an efficient, caring way with respect shown to the service user and their family members.

KentishLady

Becles I'm so sorry to hear about your parent's situation. Like another poster earlier in the thread I work in a local authority placing packages of care just like your Dad receives.

Earlier you said that you were waiting to hear how much your Dad would need to pay towards his care - if you haven't had an outcome of the financial assessment yet then your Dad still has a care manager and this means the agency who is supplying the carers is being paid by the council. So..... if the carers they are sending in are not following the care plan, or not using the equipment correctly you must phone social services and let them know - they will follow this up with the agency. You should also raise this with the agency. If the call times are not working for your parents - phone social services and tell them this! Ask for the call times to be changed or for the package to be given to another agency - social services should be doing this for you, not your parents.

You do need to bear in mind about the 7 AM call is that if Dad's last call is 9PM then it is already a long time to wait until 7AM for his position to be changed (really important to ensure his skin integrity is good and he doesnt get pressure sores) and toiletted. If you are going to ask for the morning call to be later then all the other calls will need to be adjusted too so that he is not left too long between calls.

Has mum has a carer's assessment? She should have had one and is entitled to one in her own right. If she hasnt had one - phone social services and insist that they arrange it (if needs be you will have to say to social services that Mum is struggling to cope and if she doesnt get some more support then Dad will not be able to stay at home - this would cost social services more money than the current arrangements so may push them into action).

Regarding getting some respite for Mum so she can get out to do other things - does Dad have any friends who could come and sit with him while Mum has a break? Sometimes local carers support organisations offer a sitting service (and it may well be social services will or should be funding some respite for her). I would try to get her to explore this during her carers assessment.

Let us know how you get on.

KL

Becles

Just an update:

We've had another unsuitable carer who turned up in a dirty uniform and stank of BO and cigarette smoke. Mam gave her the benefit of the doubt but she turned up the following day in the same dirty uniform and stinking! She's complained about her and the ones who couldn't hoist and received an apology. Dad has two favourite carers and she asked if they can do the bulk of the visits and they're going to try and accommodate their wishes as much as they can, make sure they send people who are hoist trained and they won't send the smelly girl again. As Dad likes the two main ones, they're going to stick with them for now.

One of his favourite carers is quite sort of matronly and bossy but in a nice way if you know what you mean. She's been blunt with him and explained my Mam can't hoist him on his own and he needs to let the carers do as much as possible. I think he's realised that now as he keeps checking she is ok and not overdoing things.

We definitely haven't got a social worker for him. We just have a care manager at social services. She said she's not a qualified social worker and a grade below a social worker. She's a waste of space and hasn't done all the things she should have done.

They've had the financial assessment back. In a nutshell they've been assessed as having to pay almost all of my Dad's occupational pension towards his care. That leaves them with just the basic state pension to live on which doesn't cover their current outgoings as obviously their household budget before the stroke didn't include losing the pension to pay for care.

They don't qualify for pension credit as they have a pension coming and they now won't be able to get a loan to cover the home adaptations they need but are not entitled to help with.

Also they were under the impression that the first six weeks of care was free. However the care manager has said because they were not discharged under the re-enablement scheme (no idea what that is?!) we are not entitled to the free care, so they're sending a bill for all the carers visits he's had to date (five weeks since he left hospital). Mam is furious about that as if they have to pay, it'll wipe out their savings.

Mam has registered herself as a carer and is cutting the care visits back to three per day with just one carer coming and she being the second carer and assisting with the work. That's the only way they can afford the care and still have enough money to live on.

She's going to contact Age UK and the Carers Association and apply for Attendance Allowance to see if she can get any further help.

A friends son works for a building company and they've offered to put in a ramp at the front as cheap as possible for them so at least they can go out for a walk. My brother found some little portable ramps that will go over the back door threshold and narrow step. It's a terraced garden so at least he'll be able to get out into the bottom section and he'll be able to see in the pond and get some fresh air and stuff.

Amanda65

I'm glad some things are sorted Becles but it still sounds like there's lots more to do. Did you see my post about occupational benevolent funds who might be able to help based on your Dad's and/or Mum's work history?

Primrose

It sounds like a nightmare but if your dad was wrongly discharged from hospital under the wrong scheme, which has prevented him from being able to qualify for some extra benefit his MP may be able to get involved and get thing rectified. It,s worth trying.