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Staring down the rabbit hole...no idea where to start or how I'll cope

(53 Posts)
MintyCedric Sat 26-Jan-19 15:31:33

Dad (81) had a fall last Monday (14th). Top to bottom of the stairs. It took us 10 days to get a proper diagnosis and vague form of treatment plan in place, due to a combination of logistics and general ineptitude on the part of the doctors.

He has 4 broken vertebrae but thankfully no spinal cord trauma. He is able to mobilize in brace with the physio team but is still spending most of the time flat in bed.

It's been a really traumatic couple of weeks - he choked and aspirated last Weds, so had 48 hours nil by mouth and is still on thickened fluids and pureed food. He now has a very bad chest and is awaiting an x ray which will hopefully be tomorrow but who knows? The last one requested was supposed to happen Friday afternoon but eventually took place on Tuesday morning after I spent 10 hours at the hospital chasing various people and ultimately threatened them with PALS and the national Press (and I am really not that person, but it's my dad and it got the job done).

He's getting next to no sleep due to general movement on the ward, and 3 of the 6 beds being occupied by dementia suffers who unfortunately are frequently noisy and disruptive.

He's highly unlikely to return to his previous level of health (which was tending to frail, doddery and depressive anyway) - 50:50 possibility over a 12-18 month period was the consultants view. He's had the brace on a few times and walked a few steps but his overall wellbeing is poor and there's really not much we can do to improve the situation.

Mum is nearly 80, she has a raft of health issues but is largely independent on a day to day basis. However, she's extremely anxious at the best of times and something of a hypochondriac with a vivid imagination. She's managing to stay at her house which is just around the corner from me but she's struggling emotionally - calling/messaging me a dozen times a day (aside from me calling or popping in morning or evening) and mostly panicking and in floods of tears.

I had last week off work on compassionate grounds but can't take any more time (term time only, although they are being a bit flexible). I'm on my own, working full time, with 14yo DD, a mortgage and absolutely no family support (no siblings and everyone else is too old/disinterested/far way).

There's just so much to do and organise and think about I don't know where to start. Suppose I just need a hand hold and if anyone's been in a similar position and has any tips that would be bloody marvellous!

Jayfee Fri 01-Feb-19 22:40:46

Mum not mum team.. Autocorrect!

JaceLancs Fri 01-Feb-19 22:54:31

I wish it was that simple DF being in nursing home does not actually mean I do any less!
They both lived together in sheltered accommodation before DF stroke
Now DM with dementia there on her own which doubles my work and visiting load
I hope I go quickly then neither of my DC have to go through this
However I don’t wish my elderly parents away so feel I have to do the best I can

Grace212 Fri 01-Feb-19 23:04:25

Jace, I hear you, I couldn't just put them in a home and then do weekly visits or something. I have no objection to those who do, to be clear.

it's just not for us. I was surprised at how some people thought I was doing too much when dad was in hospital/hospice, and now the same people have said things like "you can get a carer to help as company for your mum". these have been friends who have been surprised when I've said I'm unable to make certain days for meeting up because taking mum to doc, or have 3 days when I can't see mum so have to go on 4th day or that type of thing.

We could get her a "company" type carer but I'd much rather provide company myself, even if it is really hard sometimes. And she would hate a stranger doing it.

hendricksy Sat 02-Feb-19 06:43:49

We have spoken about it and have a plan .. I won't just leave her there obviously and it will be lovely ( we have visited a few already ! )
I actually think it's a conversation you should have early on and not leave it until they are too bad to make decisions . I have power of attorney organised already at her request .
I've told her I won't care for her personally because I have a son with sn and I feel the same about my dd having to care for my son when I'm not here . I will make sure there is provision so that she won't have to .
Sorry if that makes me sound nasty , I'm not , I'm realistic , sensible and organised .

MintyCedric Sat 02-Feb-19 09:28:57

hendricksy I can certainly understand your position, particularly with needing to care for your son too.

For the time being I just need to be there for them both as much as I can, although I'm going to use the half term break to try and get some practical stuff sorted and take mum to a few social things to try and build her a bit of a support network.

Touch wood, I am getting my day off today. Just need to drop DD at the gym and pop to the supermarket then I'm coming back to crash on the sofa, read, binge watch Netflix and eat comfort food!

MintyCedric Sat 02-Feb-19 09:30:39

Jayfee I wish I did have a Mum Team.

A chap in one of the other beds on Dad's ward has 2 sons and 2 daughters who have been tag teaming all week in various pairs to support their mum and visit their dad.

When I saw them all quite honestly I nearly cried.

juneau Sat 02-Feb-19 09:43:33

flowers for you Minty, I hope you manage to get your day off and have a lovely, relaxing time.

hendricksy makes a good point about having the conversation about moving earlier than needed. I mean, with your dad already in hospital after falling down the stairs and with no downstairs loo in their home, it's probably an overdue conversation, but when you have breathing space and know how your dad is recovering it's something you should think about very seriously. If they were to move into sheltered accommodation this year with everything on one level it would be better than waiting. The older people are when they make a house move, the more likely it is to have a detrimental effect on them. Better to get them moved and settled while they've still got the oomph to enjoy it a bit and enjoy the social side of things. Plus, as you say above, what they really need is emotional and social care, and good sheltered housing should provide that.

Grace212 Sat 02-Feb-19 17:46:41

Minty, I know how you feel looking at those tag team families!

MintyCedric Thu 07-Feb-19 21:23:16

Well he was moved to the community unit yesterday afternoon.

Not impressed so far tbh. He has his own room with t.v. and en suite loo/basin which is good but doesn't seem to be getting a lot of input from staff and by the sounds of it was largely overlooked food wise as he got there late yesterday (apparently his dinner was tinned tomatoes and mash confused).

Apparently he has his brace on briefly today and the physios have been round but it doesn't sound as if any effort has been made otherwise to get him mobilised or down to the dining room or lounge, he's just been isolated in his room all day watching telly as far as I can tell.

So difficult as I can only be there of an evening so really difficult to get to know anyone and get a real picture of what's going on.

Mum has been incredibly hard work the last couple of days but hopefully will settle down once she can see he has settled in ok.

He's going to be in for 3 weeks, then reviewed.

Grace212 Fri 08-Feb-19 12:16:54

is your mum there with him during the day? I take it she's not in a fit state to be asking questions about his care?

WTFIsAGleepglorp Fri 08-Feb-19 12:30:46

Integrated Discharge.

Almost every hospital has a discharge team.

Engage them.

Tell them your mother can't cope, the house is unsuitable and your father requires rehab, even though he's medically fit.

Ask for an OT assessment of the house, ask if there are any aids, care packages that could be provided and hold off getting him home until the IDT have given their verdict.

Some health authorities (or CCGs as they are known) do care packages that are free for 6 or 12 weeks.

WTFIsAGleepglorp Fri 08-Feb-19 12:31:40

Ah.

Sorry, I didn't realise he already been discharged. 😳

Silkie2 Fri 08-Feb-19 13:01:04

I wouldn't think that not managing the stairs will not keep him in community care, won't he be sent home to sleep downstairs with commode? Who will help him on and off if you are not there.
In your shoes I would get in touch with all services who can help and a cleaning service.
A cheery face (cleaner carer) popping in regularly can be a comfort. I don't know why you think only you can be there.

MintyCedric Fri 08-Feb-19 18:01:44

He's in a community rehab unit at the moment and will be for a minimum of 3 weeks. We'll be getting all the OT, home adaptations, care packages etc sorted out through them when it gets closer to him coming home.

The difficulty at the moment is my mum (who is practical but not great on an emotional front) is in full drama llama/not coping mode. She's also very hard of hearing and in recent years incapable of making a decision and rolling with it.

I can't leave her to deal with all the practicalities on her own as she's likely to mishear/misinterpret what is being offered/suggested. She is also saying she can't cope with the 5 minute drive to the new unit as she is feeling unwell due to the stress of the situation and is anxious about the fact it means crossing a very busy A road.

I am at work full time, in a school so cannot take any time off. Sorting out the practicalities of getting dad home will have to happen in half term which is fine in theory.

In the meantime I am trying to juggle a full time job, teenage daughter, home, pets and mum's never ending demands single handedly as we have absolutely no family near enough to help. There is literally no one else to be there at this stage in his recovery.

I have put my foot down with mum for the first time since this happened today as I am absolutely fucking exhausted. She had a neighbour take her to the unit this afternoon, and I'd already said that having basically not seen DD for 3 days between work and dropping everything in the evening to be there for her and dad I needed an evening at home.

Lunch time I get a message telling me I can pick her up from the unit 'on my way' home (it's very close to home but definitely not on my way). I said that was fine as long as she realised I would just be picking her up and dropping her back home.

She got in the car, immediately guilt tripped me for not popping in to see Dad (she suggested I phone from the car park when I got there!), was monosyllabic all the way home and stripped off out of the car telling me to 'just not bother' with them anymore.

I am just waiting for a lengthy outpouring of vitriol on messenger later...

MintyCedric Fri 08-Feb-19 18:03:49

Stropped...she didn't go as far as a stripping in protest at my apparently epic failings as a daughter!

juneau Fri 08-Feb-19 18:24:04

If my DM treated me like your DM is treating you OP I'd tell her to wind her neck in. Your DM may well be elderly, hard of hearing and upset, but she's behaving like an entitled jerk right now and she's so wound up in what SHE is suffering she doesn't seem to be able to see all that you're doing and trying to juggle. Have you said to her 'Mum, that's enough. I've got far more on my plate right now than you do and I'm bloody well doing my best and I'm sick of being your punch bag. I am doing all I can to support you and dad, but I have DD who also needs, a job that I cannot just abandon because of what's going on with dad, a home to run, and I also need to eat, sleep and relax if I'm to not lose the plot. I can't take a great deal more right now and I can really do without you constantly having a go at me. Next time you need a ride to or from the rehab centre I suggest you order a taxi'. You might want to write that in reply to her next tirade.

Silkie2 Fri 08-Feb-19 18:24:48

Sounds like you are doing a great job, OP. You just have to be firm with DM, you and DD's lives and your health are important too.

MintyCedric Fri 08-Feb-19 19:16:23

Yeah, I've reached 'foot down' point, was just hoping it wouldn't be quite such a ballache!

MintyCedric Fri 08-Feb-19 19:17:25

After dropping her off I came straight home, had a lovely bath and am about to chill out with DD, pizza and cheesecake and possibly get moderately shitfaced!

Grace212 Fri 08-Feb-19 20:17:19

oh dear
I understand not driving - my mum didn't drive to hospital/hospice either because her concentration was shot to shit. But she took taxis. I imagine if it's such a short drive it wouldn't be expensive for your mum either.

sounds like putting foot down is needed. has she accept the stairlift thing yet? I realise he could sleep downstairs and have a commode, but if a stairlift is an option, that will be much nicer all round.

MintyCedric Fri 08-Feb-19 21:33:12

It's early days but they don't think he'll need a special bed, they still have a commode from when he was poorly last year and the physio has said it's not impossible he'll be able to manage stairs at some point.

Personally I feel the risk is far too great as he wasn't consistently steady in the first place which is why this bloody happened.

I think mum has more or less come round to the idea as a short to medium term solution until they can either move to a bungalow or get an extension/garage conversion done to add and downstairs bedroom and shower room (they've been considering both options for a while anyway).

We've had a chat this evening and she's very low but not snarky thank God. I'm going round for lunch tomorrow then up to the hospital. She might come or not depending on how she feels.

She is really struggling with being on her own evenings and overnights. I feel bad for not being more forthcoming about seeing her of an evening or staying over, but that is literally the only time I get to do housework, admin, see DD and have any time for myself.

Grace212 Fri 08-Feb-19 22:17:13

"Personally I feel the risk is far too great as he wasn't consistently steady in the first place which is why this bloody happened."

agree. I'd be wanting a stairlift for him.

juneau Sat 09-Feb-19 08:29:11

Getting an extension done will take months OP! You can't just click your fingers and get it done. You've got to find an architect, submit plans to your local council, get approval, find a builder, arrange a start date, have the work done, add extra time because I've never know a single building project finish on time, etc. I honestly think they'd be better of moving into sheltered housing asap and if you only have one week to try and sort it out I think ringing round and visiting local sheltered housing facilities might be time better spent, as while moving is a huge faff it's less logistical work for you.

MintyCedric Sat 09-Feb-19 09:45:01

Quite honestly at the this stage my main priority is getting the house in a fit state for dad to come home to as soon as he is physically able to cope, with whatever adjustments/care is needed for them to cope on a day to day basis with minimal input from me. Mum is generally quite capable on a practical front but goes to pieces when she's on her own. Once she has dad back at home and some support in place if he needs it re washing and dressing etc, she will be much better.

We can then move on from there.

They have already quite thoroughly investigated having an extension with builder, architect etc. The nature of their
house and what they have in mind doesn't require planning permission iirc, so whilst it wouldn't be a quick fix, they wouldn't.be completely starting from scratch.

Whatever they do long term is not going to be quick.

Sheltered accommodation of the type they would need doesn't come up that often here as whwre we live has a massive population of elderly people. Mum has somewhere in mind should she be left on her own but it's a bedsit kind of arrangement and we came to the conclusion they would kill each other in a space that small!

MereDintofPandiculation Sat 09-Feb-19 09:53:07

What juneau says about getting an extension is quite right. But it's your Mum's home as well, and in my experience most sheltered housing is quite small. I'd go for the stairlift - some companies will also remove it for you, and give you a nominal amount of money, then they can sell it on to someone else.

It's useful to be in a large enough house to allow someone to stay overnight - my DF was in hospital last night because there isn't anywhere for someone to sleep and they didn't want to discharge him to an empty house.

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