Help - my mum, the carer, seriously ill

[Cheepcheepcheep]

Will try and keep this brief.

Dad - 73, advanced MS. Until 3 weeks ago could do a few steps, could get upstairs to bed with help. Catheter, often doesn’t make the toilet in time for #2. Needs help moving, cooking, bit of feeding, catheter care, dressing, showering. Independently could take a few steps, make a cup of tea in a lidded mug, bring to his chair, pop on the TV. Diabetic, obese so moving him is a challenge. Fairly frequent falls.

Mum - 66, in good health until last week. Dad’s full time carer - has done all the above for him for years.

3 weeks ago - Dad into hospital after stopping breathing. Diagnosed with sleep apnea. Mum gave CPR. Was getting better in terms of oxygen but mobility decreasing massively in hospital. Developing bed sores. Mum having to change his catheter in hospital as nurses not familiar with (external catheter pouch). Dad looking like he’d be out this week but already aware mum and dad would need external care support as dad has deteriorated during time in hospital.

This week - mum, massive fall. On stairs up to bed. Has broken her neck, collarbone, rib. Will recover, but incapacitated in a different hospital right now and won’t be out for at least a week and won’t be able to provide care for weeks (months?) and certainly not to the tune of anything near what she did before.

Dad and mum (mum in particular) have been very stubborn up to now and managed alone with scant details provided to us, but it’s very clear that what ‘worked’ (I use the term loosely) before now no longer does.

Dad desperate to get out of hospital, his mobility is declining by the day. No way can he do this without either a residential setting or a lot of carers. Sister and I both have preschool kids and jobs, live nearby but can only provide limited support.

Where do I even start with getting care for dad (I think mum should be ok in time but she’s clearly not at all to be considered for any kind of caring role now, and very limited caring role in future once recovered).

I’ve asked Occupational Therapy in his hospital to redo a care assessment taking my mum out of the equation for what can be offered. Hopefully this will happen tomorrow. Have researched potential rehab options nearby but tbc on if they’ll take him. Everything moving at a glacial pace and dad is declining in mobility day by day.

Can anyone point me where you go when this happens? I want to talk to someone about setting plans in place so he can get out of hospital but don’t know where to start.

sorry if it’s garbled. I don’t know where to start, my mum has been holding it together so long but with a broken neck it’s very urgently time for us to start taking over. We’re in Surrey, if relevant.

It’s been a horrific few days and I could rage at my parents for their lack of planning but now is not the time.

Do they have savings?

You need to be stubborn. You have to tell them that he cannot be discharged until a care package is in place, and stick to that.

I had a similar situation. Took two months off work (as stress) to manage the realities and practicalities of the situation. Family and friends have rallied round, and both parents now somewhat healthier and more independent again. Obvs different situation but don’t break yourself. Everything takes time to set up and become the new normal x

Savings - yes, but until I activate POA I don’t know how much and dad can be a bit vague and mum will just say they’ll handle it.

@POTC thank you. I’ve read a lot on here about stressing unsafe discharge. I’m just not sure who to talk to in order to arrange a safe one.

@Malbecmama thank you. I just have no idea how I’m going to cope and feel very lost at where to start. That’s before I factor in work, my 3yo and 4yo (thankfully in nursery for the rest of the week) and seeing my beautiful mummy so poorly.

I adore my dad but I’ve been bracing for this for 19 years. With her - I just can’t breathe for it

@Malbecmama but thank you for the hope. X

I’m being extremely clear about my sister and I and the support we can give btw, but I’m so scared about his mental and physical decline in hospital - he’s desperate to come out and tbh doesn’t need to be there now they have a CPAP mask for him

When you visit him next, talk to them. It really is as simple as saying to the person at the ward desk that you need to speak to whomever will be arranging the care package that will be required before discharge can happen.
I used to be a provider of that care package and have also been in your position, although my dad is younger and it was an accident that caused his admission, and he lives alone. I could have covered it, but I had an autistic teenager at home, another teenager that I'd taken in because her home was unsafe, and had just started a new job opening a shop. Just because I could have provided that care didn't make it the right thing to do, I would have quickly burnt out and the cost to me and the state would have been far greater!
Their finances don't matter for the immediately post discharge care, there is a 4-6 week package and only at the end of that is an income assessment required to continue the care.

We were in a similar situation not long ago. I think these are your options: a) temporarily parents move in with one of you b) you come up with a schedule between all family members to look after tehm in their house c) getting a full-time carer and paying for it (potentially with their savings/ releasing equity d) residential home respite care (again - will cost). I think even if you do find local support teams, and care assessment results in home visits - it will not be enough. We did a combination of all of the above - with a transition to accomodated living. Wishing you best of luck - its a tough situation for everyone involved. Hope you find a good solution!

My dad was also desperate to come out, but I've seen enough families end up in a huge mess because they tried to cope and once he comes home with you trying to manage it will be almost impossible to get any help. It feels awful, and like you're failing your parent, but you have to protect yourselves and your own families too

This is super helpful thank you- I’m trying to talk to the staff but it’s pillar to post territory and every day he’s getting sadder and more disabled. Stupidly I have my biggest annual event tomorrow which I have to run - I think I’m going to have to get some sort of break from work after that as I just can’t fix this with an hour here or there on the ward and trying to be at both hospitals is breaking my sister and me

That is very, very hard though. I have been through this with parents/PILs and it's hard when the person says that they want to be discharged and their daughter (or whoever) will help them. Hospitals are desperate to do the discharge and if her dad is of sound mind, he can do it. It's a very difficult situation with no easy answer. So many older people are living at home when they have absolutely no chance at all at managing. My experience of having 3 elderly parents/PILs in hospital is that they always want to be discharged. They often don't think through the practicalities, they just want to go home. And then you are left with an absolute firestorm on your hands.

Residential respite care while primary carer is incapacitated does not necessarily incur a cost. They will not and cannot force sale of assets when there is a living spouse.

Thank you so much, this is so helpful. I’d give up work to look after them if we could survive but neither our house nor theirs has a downstairs shower and we really can’t live on one income and I know in my heart they don’t want me to do that (mum was lying stationary in a head brace today saying just that).

They’re so clear on what they don’t want but there’s literally no workable option they do want

If your mum is in hospital there should be no way they would let your dad home with a 4 times a day care package but they may try. Make sure everyone knows about your kids’ ages and your jobs so they don’t think ‘two daughters can cover it between them’.

Get the care assessment done and ask about reablement stays or even discharge to a care home to recuperate and be assessed for ongoing care needs. These are often covered by the NHS for six weeks. You might also want to try the same route for your mum when she is medically fit for discharge.

Once your dad’s route out of hospital is sorted you need to talk money with your mum. If there is money they will need to pay for their ongoing care themselves either at home or in a care home. It doesn’t sound like your mum will be able to pop to the bank or do internet banking anytime soon so activate your POA. Hopefully your mum’s records are good about the accounts and balances etc so you don’t have to piece it all together.

I keep telling dad he can’t say ‘my daughters will do it’

It’s what my mum did for her her parents, then my dad, and now it’s left her with a broken neck. There has to be a solution I just can’t see it

There’s so much in this I need. My brain is a bit fried so I can’t address it all but thank you and I will be coming back to this tomorrow AM ❤️

This is why you need to be very clear with them, tell them it is to be recorded on his file that you and your sister are unable to provide care. Don't be even slightly vague, don't say you can do some, just say no. Tell them that it doesn't matter what he says, you cannot. I had to and it felt awful, but it really is the only way you are going to get through this. Obviously, once there is help in place nothing stops you then adding to that support by providing extra, but you need to be harsh right now.
My dad was happily telling them that we could sort it between us, but once I'd been clear that wasn't an option they stopped seeing it as one.

When you talk to whoever is sorting out your dad’s discharge and care assessment make sure you tell them all the things your mum did for your dad so they get a sense of how much care he was getting. Now he has been in hospital he will need even more care than that while he gets back to whatever his new baseline will be. He might never get back to the mobility he had pre hospital stay.

Sympathies, OP. It's so tough when things suddenly escalate and you're not quite prepared for it. Went through similar with my dad. The one thing I always say to friends who are now starting to deal with the same thing is, it takes AGES to sort out private carers, so if they have more than 23k in savings, you need to start thinking about this now. As PPs have said, you may get a few weeks covered by the NHS either at home or in a residential setting, but if they're over the savings threshold, at some point, you'll need to organise your own care.

My dad was just about clinging on, thanks to my mum, before he fell and had a hospital stay. When it dawned on us that we were going to have to organise a carer, for some unknown reason I thought I could phone an agency, explain the situation, and get someone just like that. No. None of the agencies could even come out and do an assessment for about three weeks, then they were all like - we don't have anyone suitable on our books at the moment but we're recruiting all the time so we'll let you know as soon as we do. It took 7 weeks in the end. I don't know if this is typical or we were just unlucky or if it's a regional thing (we're in the southeast too) but it was so incredibly stressful. So I would definitely start looking into it if i was you.

You need to talk to staff about intermediate care - this will get him 6 weeks free in a residential care home. It's not home but much better than a hospital. The aim should be to get him back to the state he was before going into hospital. That six weeks will also hopefully give you time to work out what your mum’s prognosis is and how long she will be incapacitated for. At the end of that six weeks is still highly unlikely that your mum will be able to care for him but it will have given you a breathing space. When my mum had the residential care the occupational therapists and physiotherapist visited her there and helped plan for her coming home.

Sorry that you are in this difficult position, but hopefully at the end you can end up with a solution where your dad is cared for and your mum is recovered but not doing all his caring herself anymore.

As others have said, you need to be clear with the Discharge Co-Ordinator that you & your mum cannot look after him at home. To send him home at the moment would be an unsafe discharge.

I used to work on an elderly care ward & it’s always a difficult situation, but it’s got to be safe for everyone.

This may be useful (I am assuming you are in England - see alternative versions if not)

https://www.ageuk.org.uk/information-advice/health-wellbeing/health-services/leaving-hospital/

Your Mum will need support to after those injuries too - OT and Physio at least.

Others have said a lot on this thread which I won’t repeat but is dad having some physio in hospital? They should be trying to get him out of bed and moving as much as possible. And how awfully sad for your mum, she’s had a very tough time

If they have savings consider a respite/rehab stay for him in a private care home. It will get him out of hospital to somewhere safe where they can give him the care he needs but also where he has some agency to get moving.

Yes it will be expensive, but if you hold out for free care he wil lose his mobility completely. Have a look at the clavadel in Guildford, his needs might be too much for them but worth a call and they may be able to advise.

There should be a discharge co-ordinator, or planner, or something similar.

Get on their case.

Theres probably also a hospital social worker. Get their contact details and onto hassling them.

The OT may be able to give you a run down on who to follow up with and contact details. If not, then PALS should know.

(patient advice and liaison service).

Once your event is done, ask yourself if you’re well enough mental capacity wise to be at work. You may be run down to the point a week off sick is what you need to recover.