Help for my Dad since his stroke.

[EriAndo]

Hi MN members,
I’m after a bit of guidance & advice if anyone has been or is in the same boat.
My British parents had to move back from Spain a few years ago after my Dad had a stroke.
They currently live about 5 hrs away from me as they wanted to love by the sea. Dad refused to move closer to me in the Midlands’s he doesn’t like towns and cities.
So he had another, mild stroke 2 years ago and now we are certain he has dementia.
Does anyone recognise of below are consistent with dementia?

• Paranoia
• Depression
• Aggressive outbursts inc swearing and name calling

Another thing is they have money worries.
Dad always worked, Mum NEVER did. He can’t work any more so they’ve tried to claim disability so Mum can claim carer’s allowance (Dad worked in England for 20 yrs before they moved to Spain).
Disability (PIP) was rejected as he can wash and dress himself (although when he bends down he goes dizzy and nearly falls over).
He did actually tell the truth in the assessment about his physical and mental capabilities or lack thereof.
They are currently receiving some universal credit but they have told Mum she has to get a job.
Now, if Mum isn’t at home with Dad, he would struggle. Mum has to get him out of a chair, he leaves a pan on the stove and walks away, he sometimes goes dizzy and falls down and can’t get up. He also doesn’t sleep well and wakes Mum up throughout the night so she can get him out of bed .
Told UC this but as disability was rejected, they maintain Mum must find a job and Dad will, in their words HAVE TO COPE ALONE!
Does anyone know where else I can turn?
TIA

Have you considered that some of these changes may be a side effect from his stroke? If the stroke was in the frontal lobe it can have a big effect on his personality.

Are OT's involved at all? They could do basic screening for his cognition and refer on if necessary. They can also put things in place to make his, and your mums, day to day lives easier. They may also be able to write a letter of support to UC? Does he still have a stroke review, involved in physio or anything? Again maybe they could write a letter of support?

Thanks for your reply, he hasn’t had any help really or guidance from his GP.
There has been no OT involvement and we seem to hit a brick wall when asking for help & guidance from citizens advice and UC.
Currently trying to appeal the decision made by DWP rejecting disability...
Hoping that care direct via the council will Be able to assess and help.

Frustrating as well as I’m an only child and Mum isn’t able to help as she doesn’t understand anything. So I’m trying to sort what I can myself, being 5 hrs away!
Mum has always been, in the nicest way possible - very ditsy and absent minded. Dad has always done everything for her.
I hope we get some positive news soon...

The stroke association can be quite useful. It sounds like because your dad had his stroke in Spain, he's not really in 'the system' in terms of OT, physio etc. Personally I would be pushing the gp for referrals, you can often self refer as well. Maybe contact your dads local hospital and be asked to be put though to relevant departments there. The gp could also refer to the memory clinic.

Thanks, Pushing the GP but he doesn’t seem to care and refuses to make home visit.
Doc’s surgery is a good 5 miles from their house to doctor’s and due to money worries, can’t afford a taxi. If he got the bus, mum would have to go and they can’t afford that either as a return is £8 and they are really struggling with money.
I’d help but I’m on furlough and not earning enough to pay my own bills at the moment...

How old are they both?

There may be a local charity that will help with GP visits, or ask the NHS volunteers (limited during Covid but a chance).

It does sound as it your father could have a form of dementia, although these could be a side effect of the stroke (or some more small strokes).

Hate to ask, but is there any chance he’s drinking?

If he falls and can’t get up then call the GP, tell them that and ask for a falls assessment. This should trigger occy health, maybe social services etc. Worst case scenario if he falls and cant get up then they could dial 999; he’ll get an ambulance (eventually) and they will make a falls referral.

Only 62 so they don’t qualify for certain help yet as not retirement age 🙄🙄🙄
UC keep telling my mum she’s got to get a job yet she can’t leave my dad at home safely as he needs help. Dad doesn’t drink much no, glass of red wine now and again but not every week.
He did have a fall end of Aug and went to hospital as they thought he had covid (he didn’t). Came out of hospital and needed antibiotics but GP still wouldn’t come and check him out at home. Just sent a prescription to chemist.
Only one surgery in their seaside town as well.

GP home visits are exceptional: there is no way at the moment your parents will get a home visit from a GP given what you've said.

Have they contacted Citizen's Advice for help? They might be the best people to help.

They actually sound like side effects from the stroke, my Mum also had these after her stroke.

Posted too soon! I would ask for a memory clinic referral, just to rule it out.

You could talk to Age Concern. They have been useful in supporting people through legal hoops. Have you tried contacting Adult Social Services direct?

Mum can only get a job if she can find someone who wants to employ her, and that's likely to be difficult at the moment. There'll be a lot of unwanted work in applying for jobs (which she'll have to do or UC will cease). She'll be in the market for minimum wage jobs, and the number of other people applying will be huge.

Hi I'm a dementia nurse specialist. Sounds like your dad has BPSD (Behavioural and psychological symptoms of dementia). Depending on how severe is it, it can be treated with meds however considering he has history of strokes, there are risks associated with medications such as risperidone.

As for your mum, if she's not yet retirement age, your Dad can apply for attendance allowance if your mum is down as his main carer. The form is quite long winded but what you need to show is that he needs support from another person that lives with him (Mum) during the day/night. They should also apply for housing and council tax reduction. With a diagnosis of dementia council tax should be reduced by 25%.

Also, contact Alzheimer's society. They are brilliant with giving up to date info and local support.

@LizzieSiai

Hi I'm a dementia nurse specialist. Sounds like your dad has BPSD (Behavioural and psychological symptoms of dementia). Depending on how severe is it, it can be treated with meds however considering he has history of strokes, there are risks associated with medications such as risperidone.

As for your mum, if she's not yet retirement age, your Dad can apply for attendance allowance if your mum is down as his main carer. The form is quite long winded but what you need to show is that he needs support from another person that lives with him (Mum) during the day/night. They should also apply for housing and council tax reduction. With a diagnosis of dementia council tax should be reduced by 25%.

Also, contact Alzheimer's society. They are brilliant with giving up to date info and local support.

Thanks for taking the time to reply. We have asked about attendance allowance but been told Dad doesn’t qualify as is not at retirement age either. We’ve sent an appeal for PIP as he is getting a lot worse and council came in to put mobility aids in the home so he can get out of bed and off the toilet. I sincerely hope this will help prove to DWP that he has mobility problems and should get PIP! The GP is still useless. I have called so many times and he doesn’t call me or my parents back. I even sent an email complaint which was ignored. Shame they live in a village with only one GP. The issue is getting Dad a diagnosis when the GP doesn’t give a hoot about my Dad’s health. I’ve told the receptionist today that if the doctor doesn’t get in touch within the next week, I’m reporting him to medical ombudsman for negligence. I’ll contact the Alzheimer’s society thanks - I wonder if they will help before Dad has an actual diagnosis... Thanks again and take care x