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.

You have my full sympathy OP as I'm in a similar situation except it's my DH with advanced ms and I"ve broken my ankle so can no longer act as 24/7 carer. Does your DF have an allocated SW - bang on to his medical team at the hospital about unsafe discharge - make sure it gets written in his notes. If he's discharged and falls at home you won't be able to lift him safely. Does he have a fall alarm? He'll need help dressing, feeding, prepping food, toileting. Can he get an OT review of their home (will he need hoisting?) and a 6 week care package or go into local respite care whilst your DM recovers? That would give you a chance to breathe and work out a longer term plan now you're at crunch point.
Invoke the POA. Do you have 3rd party access to their bank account so you can keep on top of any bills?

Deep breath OP.

I'm so sorry OP, this must be really stressful to deal with. I assume that both of your parents will disagree with this, but it sounds like your dad needs to be in care home. Your poor mum was doing far too much for him, and you say he's got much worse since his hospital stay. With your mum's serious injuries, she won't be able to provide the same level of care; nor should she have to. Won't it be better to have someone else responsible for his physical caring needs, so she can go back to just being his wife?

In terms of the hospital, I would say that neither you nor your sister are able to provide any care to your father, a you both have jobs and young families. If you tell the hospital you'll provide any care, they'll expect you to take on more and more.

He needs a residential
care setting for discharge. There will be stuff your mum’s doing 24/7 that you’ve not even thought of. Speak to the Ward Manager and ask to speak to the Discharge Team. Lay it on. Don’t agree to do anything for him at home; it will be too much.

Do not give up work to look after your parents - you will lose your youth, life and mind.

I agree your dad absolutely needs a residential care setting. There is no way this could work with carers popping in four times a day at home, it would a safeguarding issue. It sounds like he is ready to leave hospital so focus on him first, as your mother will be an inpatient for a bit longer. When she leaves it is likely she will need a care home/rehab unit until she is able to mobilise safely and reliably again.

As others have said, emphasise that you and your sister cannot offer any at-home care for either of them. And you need to activate the POA now.

Your dad needs respite care until your mum is fit enough to care for him. Your mum needs sufficient time to recover otherwise you are going to have 2 parents needing full time care. Your mum at her age is at significant risk of loss of muscle tone etc and may be much weaker even after she has recovered.

I've recently been in this position. You need to get in touch with his ms nurse, explain what's happening and get them to advocate. In order for a safe discharge I'd think that he would need a maximum care package, carers 4 x a day. That should be available on the NHS for 6 weeks. Nearing the end a further assessment should be done and who pays will depend on savings unless your dad is be assessed as being eligible for Continuing Care. Which is hard to get. Join a ms carers group on FB. Lots of people with experience there. Sounds like your mum's going to need help for the foreseeable future. Good luck

Age UK are very helpful with difficult situations such as you describe. Please contact them asap.

Just to add a couple of bits -

• do you definitely need to activate the POA? It may be set up like that or you may just be able to make an appointment with the bank and take the POA and ID etc to get your own debit card and login etc. Obviously your parents have capacity to decide whether this is ok in terms if maintaining your relationship but I would be fairly brusque with them - this is non negotiable, you MUST be able to pay bills and check the situation remotely. You can agree boundaries of what they are happy for you to do but don't hesitate, get that appointment set up.

• try not to focus too hard on what your dad is losing in hospital. He is safe right now at least up to a point. Has he had a review by the specialist MS nurse in hospital? I would push for that - maybe ring them yourself, they can be quite accessible. A medication review could be good.

Nb in general when speaking to hospital staff 8am to 830 can be a good time to try and catch them.

Sounds like a respite bed is the best option for a month or so, this should be fully funded by the nhs because it’s for medical needs, ask for an nhs continuing care assessment (not social services) at this stage. Once it becomes more obvious what care if any your mum needs plus level your dad needs you can make a long term plan, but it needs to involve no stairs.

Maybe it’s terminology but I thought what you describe re getting the bank to allow you access to their accounts was activating the POA? When I activated my parents POAs a few years ago I just took it and ID to the bank. It was just before Xmas and I had no appt but the lovely manager told me to leave it with him for an hour and go and do my other errands while he did all the paperwork. Then when I went back he took me through it all and I signed the forms.

Interestingly at no point did he ask me if my parents knew I was activating it (possibly because my parents were about 88 and 80 at the time so very likely to be needing help) and my dad got to keep his own bank card for times I wasn’t with him.

Hi all. I’m just back from my big “once a year” flagship work thing. Weirdly I was dreading the day but it really pulled me out of myself just for a few hours. Never understood people talking about work being a distraction for personal stuff until now - there was a thread on chat this week about how soon people went back to work after a parent’s death and (not that this is the same) I couldn’t understand the concept of work being a distraction/solace until today.

I cannot thank all of you enough for the posts and the support, this is exactly what I needed - sensible, practical advice from people who (sadly) are experts out of necessity. Will sit down and have a proper read tonight and digest. Tomorrow (whether I call in sick, take AL or whatever), I’m getting my action head on.

Very quick early thank you to @Cadenza12, how the fuck didn’t I think about contacting his MS nurse?!? Can’t see the wood for the trees right now. Thank you. Will be on the phone in the morning.

I am so so sorry for you having to deal with this. Your poor mum, that made me gasp hearing what it happened to her. To have the worry of your dad on top of that for both you and your mum as well, is really awful. As others have said he definitely needs to be in a nursing home for now. I'm not sure whether your mother will be well soon enough to take care of him at home. It does sound as though she needs a real break from caring for people. You might find she needs to go from hospital to a care home as well in which case it would be really useful if they could go to the same place.

Have you asked around your friends to see if anyone can recommend any car homes? It can be a tiring job going to all of them and speaking to them and looking at whether they are good enough for your parents.

Wishing you all the very very best 💐

Just in case your brain is fried.

I’m back this morning to say make the MS nurse your first port of call. If nothing else, they’ll almost certainly have the list of who and numbers ghg you need for the other calls.

Sadly they don’t always listen. I speak from bitter experience.

Please be very careful about this. I don’t know the answer and I’m no shrinking violet but I found I just was not listened to. I tried a lot of different avenues and emailed as well as had conversations.

100%. My DF died recently, 16 months after my DM who had vascular dementia. It was brutal. I am their only child and live over 200 miles from them. It’s been a roller coaster and work has kept me sane & given me normality.

I’ll be back later with a proper post but @Cadenza12 @ScaryM0nster thank you re the MS nurse and the reminder - she was amazing and I would honestly send you flowers if I could. She gave me 30m on the phone this morning, I got a crash course in rehab and care for my dad and all the local options. Utterly amazing. If you hadn’t suggested it I’d still be as lost as I was yesterday. Feeling almost vaguely optimistic right now. Thank you so, so much x

Right; time for a proper update. Thank you to everyone who has held my hand through this - you’re all amazing and thank you for helping me navigate the insanity of infirm parent chaos x

Today started with a call to the MS nurse. She was fabulous. Apparently the 4-6 week cover for care ended after Covid? Bloody annoying but cest la vie. It took a while to get to her - I didn’t have any of her details so it was a chat with his GPs receptionist (who was insanely helpful and so kind - I will never moan about them again!), an attempt to reach the team (got sent to orthopaedics, then asked for neurology, got urology, finally got neurology, got a phone number for the MS community admin, got an email sent to his nurse, she called me, woohoo!). As above she was amazing, took half an hour to talk to me. I was jumbling chat about respite, care and rehab and she separated the strands for me. We’ve all agreed dad has scope to recover his mobility as he’s lost it so much so she urged me to push for rehab while we think about care. Had a little sniffle on the phone to her about it all and she was so kind.

Went to see dad and, armed with the info from lovely MS nurse went to the nurses station. They’re all agreeing (hooray!) that rehab is a good option for him so he can get something close to his April mobility back because everyone agrees that his mobility is down not because the MS has progressed but because he’s stuck in a hospital chair/bed all the time. Physio are seeing him but it’s like 10 mins every 2 days - nowhere near enough.

Lovely MS nurse pointed out that his mobility isn’t actually the issue for care - it’s more the CPAP stuff and his continence issues with the fact we need to get him to the toilet. He’s catheterised but doesn’t have a huge amount of bowel control. So I’ve sold it to him that if he can get enough mobility to get to a commode (or the downstairs loo which tbf he could do regularly pre this) he should be in a better place to have care at home - which is what he wants.

Dad’s mission therefore is to get better with his CPAP so he can do it alone after rehab (though he’ll never be actually alone, we’ll be there overnight until mum has mobility to do the straps). And to engage properly with rehab to regain the strengths he had pre all of this. He knows he’s never going upstairs again in the house. He’s given me the OK to start looking at a house sale while they’re out of the house - in the meantime we’ll get downstairs set up with a bed.

Mum is doing ok. She’s done a few seconds of standing yesterday and today. She says it’s excruciating but she’s doing it and being a good patient. We’re all doing ok and to be honest the chat with his MS nurse did me good as I feel a bit more confident about navigating all of this now. Just have to hope his hospital come through on the rehab stay. Mum had v low sodium on her admission (can’t remember if I mentioned that sorry). They think that may be the reason for the fall but her sodium levels are back up in hospital and they’ve tested for all the ‘scary’ reasons for low sodium (heart, liver, kidney) and looking ok. They still want to test her for any other reasons but it may just be a ‘she was stressed and not looking after herself’ explanation.

All being well mum will have another week in hospital to stabilise her fractures but after that she’ll be on the same path as dad - rehab, carers - but will get her ‘day to day’ mobility back. Not her ‘superhuman looking after dad’ mobility - but she needed to drop that at some stage. Dad said to me earlier today that there was a certain horrible inevitability to all this. I said I’d take the inevitable care stuff over not having him here - id rather have my dad around and be sorting carers than him not being here.

I’ve told them if they’re very good I’ll push for them to be in the same rehab unit come next week 😂 they’d love that, they drive each other mad but they adore each other. And I need someone keeping an eye on her to stamp out any urge she has to run before she can walk (actually any desire to run whatsoever).

Both have them have ok’d me activating the POA for finances and property. To answer a couple of points up thread, you now have to officially activate it via the Office of the Public Guardian. Appointment booked at their bank tomorrow to get everything sorted and I have a spreadsheet on google sorted with sister so we can log all spends so no one fights deprivation of assets with us when we get down the line.

It’s been another horrible day but I’m feeling just a little bit better because I’m not completely clueless any more.

I know life after this won’t look life before it and, very importantly, mum and dad know that too. But there’s some hope that it’s not going to be this bad forever and for that alone I’m feeling just a bit better. Can kiss goodbye to my inheritance but tbf I did that 19 years ago when dad got diagnosed so all good 😂 sorry - gallows humour.

I can’t begin to thank anyone on this thread for the support these past couple of days. Thank you.

Sorry. Can’t imagine anyone’s reading after all that. But I’m really struggling to eat and sleep at the moment - I really have to stop not eating all day then staying up til 3am because my brain won’t switch off.

Does anyone have any suggestions? I have the Calm app but I’ve had push notifications tellling me to ‘take a minute’ this week so I sort of want to tell it to fuck off 😂

You're running on adrenaline.
Have nice snacks for fuel if you don't have time to eat. Get outside for 5 minutes. Walk round the block.
Resting is almost as good as sleep, so if you can't sleep, get warm and comfortable. I find reading is a good way to unwind.

Thanks @Beamur. Really appreciate it. I just feel very wired. Too much strange energy and I can’t do anything practical this time of the night. Tried the wards but they rang out - I’m sure they’re just busy but I wish I could check in on mum and dad.

A little walk might not be a bad idea. I’ve had 9 hours sleep in 3 nights - i just can’t get my brain to switch off.

Well done you. Sounds like a big jump forward in getting a plan - and that’ll come with adrenaline as you’ve been so worried.

Some practical suggestions.

1. This is a marathon, not a sprint. You need the ‘you’ versions of the crowds cheering on, the feed stations and the water stations. That means breakfast, lunch and dinner. Fibre and protein. It’ll sound bonkers, but try making overnight oats each evening. It’s 5 minutes of calm to wind down and also sorts breakfast.
2. Give your brain a break. Get a notepad and pen for next to you bed. (Not phone) and then can write stuff down and know it’s ‘safe’. Then you can stop thinking about it. Helps with brain calming down.
3. podcasts / audio books are good for helping with sleep. Calm app might not be you right now, you need interesting but not exciting / hilarious. Some of my go tos are: Victoria coren Mitchell poker book. Sandi toksvig bio, Natalie Haynes radio 4 series, f1 technical podcasts, Hannah fry stuff.

Yes to writing everything down. I made endless lists, but it helped to get everything (somewhat ) out of my head.
I did, and do find the Headspace meditation app useful. Even just 3 or 5 minutes to start with now and again.
You are doing a brilliant job, take care.