Advice needed on what care needed

[Achooblessyou]

Hi all
I'm fairly new to this topic as my mum has only very recently declined quite quickly. I have only had 4 weeks of hospital visiting and it has really taken it's toll - I've read some of your stories and I've no idea how you do it.

I think mum suffered hypoxia during suspected cardiac arrest and is very confused. She also suffers very badly from rheumatoid arthritis and COPD and is very frail. Since the CA she has been in nappies, and though she can get to the loo herself with a stick, I've seen her come out in a mess and not even show any awareness that she was in a mess. Every day after hospital visit I have plenty of washing to do of wet or soiled nighties or dressing gowns (she goes to the loo herself and comes out having taken nappy off, which nurses won't realise for next time).

She really wants to go home, my dad is at home. My dad has emphesema and is functioning alcoholic, he is also extremely frail. He says he won't go out to pub when she is home but I don't believe it. He has been known on occasion to get so drunk he's fallen out of taxi and needs carrying in by taxi driver. I'd like to say he'll stop that but I don't know. When we go to hospital I pick him up and take him to ward in a wheelchair as he can't walk any distance. He's never done any cleaning but he can cook and wash up. I get the shopping. Last week I showed him how to use a washing machine for the first time in his live - he's 72! But generally he gets up after lunchtime and doesn't move all day except to cook or go out to pub.

So I know they need help. I am a single parent and live 25 minute drive away. I'm the only one in the family that drives. . I already do their shopping and visit once a week but I work 40+ hours a week in a stressful job and it felt like too much even before she got so ill. I was already feeling ill myself trying to juggle work, kids, school stuff, housework, kids clubs etc

Would it be enough to have a carer for a couple of hours to get her up and a couple of hours late afternoon to make sure all is ok before bedtime? Main jobs I think are to sort out the 12+ different types of tablet she takes, make sure she is clean, make sure bed is clean, do washing. They already have cleaners that come once a fortnight for general cleaning. Also I live in UK, how much help should I expect from the state and how much will need to be self funded?

Any advice much appreciated. I will hopefully be party to discussions when she goes home, but I know if nurses discuss it with mum and dad they'll decline everything. I don't think my dads got the first idea about what might be involved in caring for her. I don't think he realises she's in nappies.

I want to be prepared for the discussions as I've been warned there's not much money to go around and they'll let us get on with it without any help if they can get away with it. Don't know if that's true but I want to be prepared. Thanks for any advice.

[Melfish]

I think when your mum is discharged you should get carer visits at least twice a day for 6 weeks; the team who are discharging will assess how many visits a day are needed. These visits are funded by social services or the NHS. However, I think your parents can decline entry, I know DM did on a few occasions for DF. After that I think, and I can only go on my experiences dealing with DF, the council assess your parents' ability to pay and if they have below a certain amount then they fund future home visits. DF always had to pay for his own care after the free 6 weeks expired. Much of it seemed to hinge on how much money DF had.

The chemist can sort out a dosette box for your mum, dividing the pills into am, pm, lunchtime etc sections so she knows when to take it.

I am sorry that your DF is not more able to help, please do not be afraid of saying no to doing too much. You must remember that you being healthy and relatively stress free (!) is very important not just for you and your kids, but so you can offer some support to your parents if you are able to. It is tempting to feel guilty or obliged to help your parents when they are ill but there is only so much time in the day and you must be careful not to spread yourself too thinly. my DM is now in hospital having had a severe stroke, but the level of care and support she needs is too great for me to manage if she is discharged. It is realising that I have found the hardest. But it gives me a clear line to tell the discharge team, for if you offer to do stuff on their behalf or take on responsibility for your mum, they will take you up on this. Good luck and stick to your guns.

[Achooblessyou]

Thanks melfish that's really helpful to know. Sorry to hear about your mum

[twentyten]

Sorry to hear this. Great advice from melfish- looking after yourself has to be top priority. Get all the contact numbers you can for local age UK etc- and do not overcommit. Age UK can help sort out what help your parents are entitled to. Be firm. Protect your family. And plenty of wisdom on here- keep posting!

[twentyten]

And have a look at power of attorney- helps a lot but takes effort.

[Marshy]

You need to speak to the ward manager and ensure that you are included in any discharge planning, with your mum's consent if course. This will probably involve assessment and input from the OT and/or social worker to set up a care package prior to discharge which may or may not require a financial contribution. It's important that you contribute to the discussion to fill in the information gaps if your mum is likely to minimise her difficulties or to say you or your dad will do all the caring. It's ok to be up front about what you can or cannot do. Better to be honest about that now rather than over commit yourself and then not to be able to cope. Be proactive about this. Discharge can happen quite quickly sometimes if they decide your mum is medically fit to go.

Oh and just to say - they're incontinence pads not nappies.

Hope you get it sorted op. It can be a very stressful time.

[Achooblessyou]

Thanks all

To update - mum got a final diagnosis through - she has lung cancer - which isn't linked to her confusion but was picked up through all the tests she had. It's not spread to her brain which is good. But obviously not good.

Despite asking doc and nurses to be involved she was sent home after carer discussions just with my dad. I'd already spelled out to them though that she'd need plenty of help, so I think it's ok. I think she has what she needs - carer is visiting 3 times a day. Genuinely great.

Mum has started off "refusing all assistance" as carer mentioned in her notes! But I spoke to mum tonight and hopefully convinced her that having someone to care for her isn't something to be embarrassed about, she needs it. I'm hoping she'll have her bed made tonight (mum struggled to put her own sheets in wash), and help with a bath tomorrow. Lets see...

My next issue - she has a tumour on her lung. Docs said they wouldn't recommend chemo etc because of her confusion. But I want to make sure mum has the option to have the treatment if she wants it. Cue difficult discussions "you remember what they said about your lung"...So far she says she doesn't want treatment but will she panic in a couple of months when it really sinks in? Will she then wish she'd started treatment?

My mums only 68. I know if it was anyone else I'd say "not as bad as being in your 50s or 40s" but it's my mum and it's not fair!

I'm not asking for advice here just getting it off my chest!

My whole family are in denial about this. I've read that only 1 in 3 survive beyond a year after diagnosis. No-one else seems to realise. I haven't spelt it out to my mum.

I'm sort of ok with it. I'm thinking quality of life rather than quantity. I'm thinking it's the best option, to avoid treatment. My mums quality of life is poor anyway due to arthritis, even though her confusion is better now that she's at home.

I think we need to play things by ear, and the docs will be in touch again soon to offer more tests to confirm what type of cancer it is and how aggressive.

Thanks for listening if you got this far! Happy to hear anyone else's experience.

[twentyten]

Hi ! So sorry to hear the diagnosis- you're right, it's not fair she is young. Rant away. You are heard. In some ways stepping back might be a good thing to let the carers sort her out- with your encouragement. I feel it is our role to facilitate- not do,but it's not easy. Good luck and look after yourself.

[Achooblessyou]

Thanks twenty

[Achooblessyou]

Oh and Marshy thanks for the tip about what to call those things - as I say I'm new to all this! But good to know!