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Help. Think I might need my hand holding :-(

(12 Posts)
Theas18 Thu 01-Nov-12 23:25:57

Parents 88 and 84. Dad has dementia can't see or hear well, he falls a lot but generally gets away with it. Mum has poor vision and is generally shrinking and getting frail - she has cardiac failure and her kidneys aren't good either.

They live just over an hours drive away in the family home full of hoarded stuff.

They don't have carers or help at home at all ( it's so cluttered!). Fortunately they have a car pool so can get to appointments and go to " the autumn centre" once or twice a week ( where mum does crafts and dad tells his tales to others with no memory either so they don't mind!).

I go over about 1x month to take them to lunch and shopping.

My sis us just 15 mins away and has seen thrm / shopped most weeks.

Sis is moving to Spain ......

I'm in a tizzy really at the moment. I can't really go every week. I work 4 plus days a week.

I feel terrible " leaving them to it" but it's clear from when they do stay here they regress to not dong anything for themselves if someone else will do it- I even have to choose dads food when we go out!

They arent needing sheltered/home type accommodation yet....

Sorry it's a ramble.... I'll be back in a few weeks when things are more clear I guess.

peeohayess Fri 02-Nov-12 06:36:58

Hello... Didn't want to leave you unanswered. Is there any reason why they don't have any sort of home help in? Have they had care assessments?

Maybe you could speak to Age UK to see what kind of help is available? It's very difficult when things like this are just left down to you, but there is support available. Iirc the Red Cross can arrange companion visits if there is no need for actual "care".

I'm probably not hugely helpful but there's a starting point for you. And please please don't get sucked into feeling guilty unless you are genuinely neglecting them! Good luck!

feetheart Fri 02-Nov-12 06:58:29

I couldn't just read and run. I really feel for you and know we are going to be in a similar situation at some point though we all live at least a flight away.

I have worked as a HomeHelp in the past and it definitely sounds as though your parents need help. I would also say that they are at the stage where sheltered housing is worth looking at. It does sound as though they are one incident/accident away from a crisis.
I second contacting Age UK. I have no idea how the system works now but they will.

Whatever you do DON'T let SS or anyone else bully you into doing anything that you don't feel up to - you have your life/health/job/family/etc to think about as well and just a 2 hour drive adds to the strain.
I hate to say it but be prepared to fight for what they need.
Can you and your sister get together and work out the best plan of action?

Good luck.

outtolunchagain Fri 02-Nov-12 06:58:59

Why do you say that they don't need sheltered accommodation yet, from your description I would say that they are well passed that . I would start to have some discussions about care , I work for an organisation which owns very sheltered and residential care units and people far to often end up in a crisis situation because they haven't made decisions early enough.

3littlefrogs Fri 02-Nov-12 07:38:40

Hi. I have had a lot of experience of this, having cared for my own parents, 2 neighbours and currently my PIL. Stroke, dementia,incontinence, clutter, the lot.

Please talk to Age UK. They will give you good advice.

You also need to sort out attendance allowance for both your parents if you haven't already done it.

You may be entitled to carers allowance for yourself. Ask AGE UK. this will help with the cost of a carer.

Have they got a social worker? Who organised the day centre?

You should contact social services, citing "emigration of primary carer", and ask for an assessment with a view to getting someone to do the tasks your sister was previously doing.

Social services will probably tell you that you can't have any assessment or help unless your parents consent to full financial disclosure. This is incorrect. As long as you agree to pay for the carer, this is not compulsory.

You need, as a matter of urgency, to get both your parents to sign a letter giving permission for their GP/hospital to discuss their medical history/care with you. Ensure that an original goes into their medical records, and another original is with you. This will save you endless hassle and stress further down the line.

Then you need to look into power of attorney. This is expensive, but again, will save a lot of stress later.

Clutter is a fire hazard, a falls hazard, and makes the symptoms of dementia worse, so whatever you can do to reduce that, the better. (However, I am 2 years into the process with PIL and not anywhere near winning yet).

It sounds daunting, but the sooner you get the process going, the better.

Good luck.

3littlefrogs Fri 02-Nov-12 07:40:50

I agree with outolunchagain. Sheltered accommodation sooner rather than later is the ideal scenario, but unfortunately, getting them to agree to it once the muddle has set in may be very difficult.

ToothbrushThief Fri 02-Nov-12 07:43:29

Another voice agreeing a need for sheltered accommodation has been outlined rather than it isn't?

AGE UK sounds a good place to start for advice

Theas18 Fri 02-Nov-12 09:58:38

Thanks all for your kind replies.

Power of attorney is sorted and GP will speak to me (and is lovely) . TBH I've encouraged them to deal with hospitals as Mum does have capacity and if I go will have me making choices for them, which isn't the right thing.

Sheltered accom is a real issue that they haven't /don't want to think about and actually I think they are beyond the simple " warden pops in mon to fri" sort. At the moment they are where everyone knows them and has grown old with them since 1971 in a cul de sac and the neighbours are golden (eg they had a power cut in the close and next door were round telling them all about it and when it was due back on before they'd even worked out it wasn't just a fuse).

They feel they are " coping" and don't need help, but it'll no doubt transpire that sis did more than shopping (I have no idea how they clean the bathroom for instance). Mums cooking has gone off, but again, if they eat what they want, it's not for me to say froz veg and microwaved chicken bits isn't OK (ick!).

They are absolutely 1 fall or illness (at least on mums part) away from a crisis as he'd not cope at all. It's getting so we can't take him shopping as he wanders (round and round lidl chasing him isn't fun) and leaving him at home he "potters"..... which is fine until he potters in the garage and plays with his circular saw (at least that's our guess- neat circle of skin off a knuckle) his answer " dunno....caught it on a nail I think" (with a sort of 5yr old caught out expression!)

I think when sis has definite dates we need to start with a big declutter and take it from there.

THey are reluctant to pay for care I think, when they don't see the need - but the great " diarrhoea incident" might have pointed out to mum she can't do it all (rinsing shitty joggers in a bucket in the garden- I knew because she had bruised fingers from carrying the wire handled bucket....)

twentyten Fri 02-Nov-12 16:23:46

agree with all the good advice here. Get an emergency plan in place-contact nos etc. I never thought my mum would accept carers but we found a great one. m and s frozen meals are fine!
Disconnect all dangerous appliances!

mymatemax Sat 03-Nov-12 22:40:06

If they are happy to accept neighbourly support would they accept more regualr formalised help from a neighbour, or friend of a friend type of thing that they pay for?

Rosy Thu 08-Nov-12 14:30:59

Hi Thea - we're just starting this with my mum (in good health, but is starting to have dementia & lives alone). We've spoken to her local social services, and they've done a phone assessment, and have decided to allocate her a social worker, who will do a home visit to decide what support she needs. We also got her GP to refer her to the "memory clinic" where she got a really thorough assessment of all her living conditions, as well as her mental abilities. The nurse there was able to recommend what kind of accommodation she needed (not residential care, as we had thought).

We were advised that we don't need a solicitor to get Power of Attorney, we can fill in the forms ourselves and register them for about £80 each (financial & welfare). In general we've been pleasantly surprised how much support there is available, and how helpful people have been.

We realise now that when we were there we should have been a lot nosier, looking in the fridge, the cupboards, asking her how she manages the cleaning, what she eats, when she last had her hair cut, etc. Don't have any advice about persuading your parents to declutter though - if you find out how to do it, let me know!

Theas18 Fri 16-Nov-12 23:03:04

Update:
Sister is rapidly putting most of her stuff in eBay etc. but- and I can't really live this ... Shipping everyone's beds to mum and dads so thy have somewhere to stay over here !?
Umm thy ave a 3 bed house but the 2 spare rooms are cluttered like No ones business .... That'll be interesting...

Going for "Xmas" a week tomorrow . Tbh at the moment I'm staying wll away...we will have them here for a coupe of weeks in dec. I might have a chat with their p at some point.

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