I'm worried about my Mam and Dad

lilmissreading

OP - my goodness your family is going through the mill. All suggestions I am going to make will work better in some areas than others due to postcode lottery.

I second the suggestion to contact the stroke association. They can really help with information -check out the leaflets section, for example on the hidden side of stroke. Your local named representative should come to the home and know what local services you may be entitled to.

Ask your GP who is reponsible for carrying out his stroke review. If you can bear to it is well worth googling NICE (2013) Stroke Rehabilitation. You then have a list of what is rcommended and you can ask the GP how to access these needs.

Google wheelchair services or physiotherapy (neuro) - someone should be assessing permanent seating arrangements.

Google neuro or stroke rehabilitation for your area. Most (not all areas) have dedicated teams that can see people at home for rehabilitation.

Find the name of the stroke consultant he is under - ring his office and see if he can advise.

Ring the local hospital and ask to speak to the stroke nurse. Keep trying.

Ring the local hospital and speak to the stroke unit.

Contact Headway.

Google carers support e.g. crossroads, princes trust etc

Ask social services for a carer's assessment for your mum. She is entitled to an assessment herself on her needs.

Record all care failures. Complain. Tell the care agency you will be complaining to social services if this continues. Tell the care agency if that doesn't work you will contact the CQC (care quality commission). Tell the care agency if that doesn't work you will move agencies.

Contact social services to ask for an ot to reassess the environment.

Stroke are complicated. Some people lose their ability to reason or remember. For example they can't understand the impact of their behaviour on others or can't remember what they are told so they get anxious on their own. Some people have personality or mood changes secondary to stroke. Ideally in a complex situation a neuropsychologist would assess and advise on the best way to manage but they are like hen's teeth.

If think of anything else I'll post it. The trick will be to find the person who is able to get the wheels of the rehab machine moving. It's probably going to take a lot of leg work from you.

Newly_retired

This is a truly difficult situation and I sympathise.

Have you had any advice about disability benefits?
Your dad should be entitled to PIP, though it can take ages to get an assessment done. It is not means tested, but from what you describe, his claim should be successful. The money can be used to pay for better care, or respite care or adaptations or whatever, as there are no restrictions.
With this in place, your mum will be entitled to carer's allowance. That is means tested, so she may not get any money, but there may be other entitlements,
You should get back on to the Social worker or whoever set all the care needs up and ask for a review, until you get the arrangements that they need.
Your mum is entitled to an assessment of HER needs as a carer too.
Don't just accept that this situation is inevitable, or your poor mum's health will be at risk.

ka_t19

I'm so sorry to hear about your dad, my mum had two serious strokes last year resulting in her being paralysed on both sides from the neck down. After a long stay in a rehabilitation unit she was allowed home and is now fairly mobile but still relies on my dad - a lot! She also refused the help of carers! Can I ask if your dad gets physio at all to help? There should also be local support groups for stroke survivors which I know my mum had found a real help you should get details through your social services. You need to have a chat with him and be really tough ( it's hard trust me!) but in time he will get there your mum also has to stand her ground and insist that the carers help - what would he do if your mum ended up ill? Sorry for the Huge paragraph!

Person_one

I absolutely concur that you should contact the Stroke Association, in my experience they are absolutely brilliant and completely understand the sorts of challenges your mum is facing. They have a helpline if you or she wants to chat to someone: 0303 3033 100

Wilma33

I suggest you, your mum and your dad all agree what the carers will do on each of the visits. E.g. 7am will get him up, toileted, washed and dressed, and get his breakfast. 11:30am will get him toileted and get him lunch and a drink and move him. 9pm will get him toileted and put to bed etc. Then he can't say he doesn't need them to do anything. Write it down, stick it on the wall to make it clear to everyone.


Do you expect his condition to improve? If not, how long can your mum cope with this situation? It might be better to take a change of approach now rather than wait until she is burnt out and too ill to cope any more.

whodathunkit

Newly_retired wrote: »

This is a truly difficult situation and I sympathise.

Have you had any advice about disability benefits?
Your dad should be entitled to PIP, though it can take ages to get an assessment done. It is not means tested, but from what you describe, his claim should be successful. The money can be used to pay for better care, or respite care or adaptations or whatever, as there are no restrictions.
With this in place, your mum will be entitled to carer's allowance. That is means tested, so she may not get any money, but there may be other entitlements,
You should get back on to the Social worker or whoever set all the care needs up and ask for a review, until you get the arrangements that they need.
Your mum is entitled to an assessment of HER needs as a carer too.
Don't just accept that this situation is inevitable, or your poor mum's health will be at risk.

The appropriate benefit for someone over retirement age is Attendance Allowance and, unfortunately, pensioners are ineligible for Carers Allowance.

Becles

Mojisola wrote: »

With that amount of care needed, I would look seriously at residential care.

He's terrified of going in a residential home. He hated being in hospital and was crying and begging us to take him home when he was in there. There's no way he would go willingly into a home.

CH27 wrote: »

Would selling their house & moving in an adapted sheltered accommodation property be an option?

That's a whole new can of worms! They've lived there for 32 years so are settled and both can reel off a list of reasons why they don't want to move home! Some reasons I agree with, some I don't!

pawsies wrote: »

Mum goes out for 2 hours whilst the carers are there so he has to use them?

They're only there for 30 mins at a time. We can't get that increased with the current arrangement. That's why I'm looking after him while she goes grocery shopping as the supermarket is 10 mins away, so she can't do a weekly shop in 30 mins.

lilmissreading wrote: »

Stroke are complicated. Some people lose their ability to reason or remember. For example they can't understand the impact of their behaviour on others or can't remember what they are told so they get anxious on their own. Some people have personality or mood changes secondary to stroke.

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!

Newly_retired wrote: »

You should get back on to the Social worker or whoever set all the care needs up and ask for a review, until you get the arrangements that they need.

This is where the problem started. A hospital social worker organised the delivery of the bed and other equipment and organised the carers. We were not consulted about the carers, just told these are the times they have been booked for, hence the inconvenient 7am slot. She's now discharged him and washed her hands of him as she only deals with hospital patients.

We now have no social worker and no other care arrangements. Mam did ring their GP and ask about physio and he's organised two ladies who are coming in regular. One does physical work on his "dead" limbs and muscles to try and get them working again and the other works on his mental skills as we know some of his brain doesn't function correctly.

Wilma33 wrote: »

Do you expect his condition to improve?

That's a how long is a bit of string question! Some things have come back like his left eye is partially working again and he's got more control over the left side of his mouth now so he can use a proper cup instead of a cup with a spout. He was written off by the hospital physio and consultant who both told us there would be no physical improvement whatsoever. He's improved since being at home and the current physio said maybe he may improve and be able to sit unaided etc., but it's very much and wait and see what happens process.

Big thanks to everyone who replied. There's lots of useful things in here and I'm going to make a "to do" list over the weekend and see what else we can sort out.

Chunky-monkey_4

Hi, sorry if this has been suggested before.

I would request that his social worker and District Nurses undertake assessment for Continuing Health care to see if he screens in. Sounds to me like he would.

It is a long drawn out process but worth it if he is entitled. His care would then be paid for by the NHS and he and your mum would get more care time and your mum would be given more respite.

It may be different in different areas but I would for sure be asking for an assessment.

Good luck with everything.

Mojisola

Becles wrote: »

They have carers going in at 7am, 11.30am, 3pm, 6.30pm and 9pm, but Mam has since dropped the 7am call as she kept getting up just for them to say oh he’s still asleep so we’ll not do anything.

Rather than drop the 7am call, why not make for later in the morning - say 9am and then push the 11.30 call back a bit?

Carers are meant to be there for when you need then so arrange timings that suit your Mum and Dad.

Have you got a Crossroads charity in your area? They help the carer and will come and stay at the house while the carer goes out, has a snooze, a relaxing bath or whatever they want to do. I had someone for three hours once a fortnight. It was lovely to be able to switch off from being a carer during that time.

Amanda65

Hi Becles

So sorry to hear what your family are going through. I agree that your Dad needs to ease up a bit on your Mum or she will end up in hospital and then he will have no choice about where he is cared for.

I work for an occupational benevolent fund and there are lots of us who can help with top ups towards home care (most don't do residential care home top ups), house adaptions (am assuming your parents savings aren't over about £12k?) and some have helplines etc. If you let me know what line of work either / both of your parents were in I will see if I can find one that might be able to help (you can PM me info if you prefer).