I'm out of my depth

[iklboogiemaninthecloset]

I'm really after some advice, really, if anyone has any please.

My folks are 71 & 74, very frail with severe COPD & limited mobility. Mum also has heart problems & pulmonary hypertension. Years of Olympic standard smoking!

They have a stair lift in the middle room (terraced house) but mum hasn't got the breath to get there even though she's on 24/7 oxygen. I'm waiting to speak to their doctor about that. At the minute she's using a commode but they can't empty solid waste as the toilet is upstairs. They're also struggling with hygiene.

I live about 20 minutes away, don't drive due to my own medical reasons. DH & I work full time and we have DS(15). I'm an only child. Mum has a sister but she's 68 and has her son with MH issues living with her.

We're splitting care as much as we can, but it's very difficult. There's no chance they could move in with us or vice versa. Money is very tight so we couldn't afford full time care - even part time would be difficult.

I've contacted local adult social services & waiting to hear back. Likewise their doctor. I've requested a personal alarm system so they can contact us in an emergency.

Can anyone please give me some advice about what else I can do or who I could contact for help & advice.

TIA

Didn't want to read and run - handhold for you x

Would they consider both going into a nursing home?

There's an Elderly Parents board on here, you would probably get a lot of good advice if you ask Mumsnet HQ to move your post there?

If does sound as though they need a full assessment by social services for their needs. You may need to be really pushy to get this.

Adult Social Care should carry out a needs assessment and then a financial assessment - this will assess what care they need and then how much of it they'll need to pay themselves. It may take a while for this process to complete though.They don't have to go into a home if they don't want to, there are home care agencies. Do they claim any benefits? If not look into Attendance Allowance.

A local welfare charity or Age UK can help with claiming for Attendance Allowance, they really sound like they would qualify and could get up to £80 per week.

Adult social services is what you need. If they have a waiting list, be noisy! Don't give up - they will get to you (eventually). Things are a bit different if you're in England or Scotland - in Scotland personal care is free. Most social workers work closely with occupational therapists, and the OTs might be able to suggest other equipment or see if the house is suitable for installing a downstairs loo/chemical toilet or something like that. They could also sort out other equipment eg walking frames/grab rails/ramps etc.

Care at home might involve carers coming in regularly, up to a maximum of 4 times a day. They could empty the commode and help with personal hygiene. They do a range of things depending on what's needed - medicine prompts, food prep, helping people walk to the loo etc. There will be a financial assessment to see whether your parents can contribute or not.

Where are your parents sleeping - can they get upstairs for bed? And can they get out at all or are they completely housebound?

Thanks all. They wouldn't go into a home, I know that much. I'll ask what benefits they're claiming. I think mum believes they won't be entitled to anything because they both have small private pension income. They own the house outright and I would really like them to sell it & move to assisted care nearer me but they won't entertain it.

We've moved beds downstairs for them but they're completely housebound. Mum does online shopping for them, but I think now they're having trouble answering the door & putting it away.

I'm tenacious when I want to be. I'll keep contacting adult social care & see whether the GP can do a medical referral for help.

Thank you.

Attendance Allowance is not means tested, it's based on needs, so it doesn't matter what their other income is.

Attendance allowance isn't means tested so they will still be eligible for it.
Slightly different scenario as my Dad was terminal ill, but we got carers in 4 times a day for him and that was arranged through the district nursing team.
I'd phone their GP for advice, they can contact the nurses if needs be.

That's good news. Thank you.

I have phoned the GP so I'll ask about nurses etc.

Thank you all so much for your help.

Age uk is a great resource and can help you understand what they might be entitled to. They can also help out with form filling.

They need a home visit from the gp or community nurse, if they have oxygen for severe copd then they may also have a specialist lung care nurse you can speak to. If they cannot even empty a commode then they do need help.

Yes you need to contact adult social care in the first instance, standard turnaround is 28 days but they can do assessments quicker than that if you tell them it's urgent. In our area they have a rapid response service which could be providing care calls free of charge starting immediately whilst your parents wait for a needs assessment. You can also request an OT assessment at the same time and they will look at long term access to facilities.

This is all so helpful. Thank you all so much.

Just an update to thank everyone again for all the advice.

My folks' doctor phoned me yesterday, as requested. After waiting nearly three weeks because the surgery somehow had an old mobile number of my mum's instead of updating with my number - which I've given them three times.

I spoke to a lovely lady locum who was just there for the day. She'd read their records so wanted to chat about how they were coping, so I told her everything.

Within FIVE HOURS the Social Crisis nurses were at the house making an assessment. They had a good chat with mum & dad and made a list of their needs. They emptied commode, are arranging a fire safety check, panic / fall alarms and a perching stool in the kitchen to use while they're heating food in the microwave.

The nurses are also contacting Adult Social Services to chivvy the assessment from them and if it's not in the next week or so will arrange a community nurse to come in once a day to empty the commode and check on them.

I honestly can't thank the doctor enough.

The lung nurse also came & switched mum's oxygen machine to a 6 litre one to try and help her breathing. The physio is coming next Tuesday to assess dad to see what walking support they can put in place for him - like a walking frame, grab rails on the way to the kitchen etc.

Thank you all again for the brilliant advice. I wouldn't have known where to turn without you.

That's a good start OP; it just shows how speaking to the right person can get things done! I hope you can get something sorted for them soon.

So pleased to read your update OP!

@iklboogiemaninthecloset

I had this with my grandparents, and my parents (1 on end of life) and now my remaining parent

Sending big hugs

Where in the UK are you? Xx

Thank you @myheartskippedabeat - I'm just outside Manchester.

Wow, amazing update. That must be such a weight off your mind, it sounded as if you were struggling all alone with this which is very tough. Now they are properly in the system things should get a lot better.

Yes @maslinpan. It's a huge weight off now things are being sorted. They've just had the panic / fall buttons delivered (7:15 on a Sunday night!) and the fire service are coming in the week to do the safety check. I honestly can't thank that doctor enough.

@iklboo

Thank you *@myheartskippedabeat* - I'm just outside Manchester.

https://secure.manchester.gov.uk/info/100010/socialservices/3584/getthelpsupporttorsociall_care

The local authority pages are useful xx

Pleased to hear support services are kicking in. This website is great for looking at what financial support they may get. Www.entitledto.co.uk