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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!

thesandwich Sat 26-Jan-19 16:56:26

Minty, so sorry to hear about your Dps.
What I can suggest as well as offering a hand to hold is to contact age uk, look at your county council website which may have information about support available.
Age uk can advise re funding, applying for attendance allowance non means tested up to £80 per person per week.
Push for an ot assessment of your dps house to look at aids to help mobility.
And try to get help in ASAP- cleaner etc. Get your dps used to it.
If you need time, ask for more time because now is crucial to ge5 things in place. And be kind to yourself. 🌺🌺🌺

MintyCedric Sat 26-Jan-19 18:46:28

Thank you.

One thing that really worries me is that mum, who is normally very practical and absolutely wears the trousers, just cannot seem to make any decisions about these things.

I told her the other day that is found somewhere we can hire a stair lift from, so we can get dad home at some point and then consider the longer term options.

She replied 'Hmm, I don't really want a stair lift'. They live in a house with and open plan living/dining area and no downstairs loo. I pointed out out to her that what she 'wants' doesn't really come into it!

Grace212 Sat 26-Jan-19 19:39:40

is your mum in denial about what his recovery might be like?

family friend had spinal surgery in her 80s, she had a stairlift fitted initially but now only uses it when she's really tired. Is it possible your mum has heard tales like that and thinks, ach, well, it will be fine?

regardless, I feel for you. I might have said on your other thread but I don't have a helpful sibling or anything and this is very tough.

are your parents on good terms with neighbours - mum's neighbours are great and it really helps.

wigglypiggly Sat 26-Jan-19 19:52:05

It sounds very difficult, are they hoping he will be able to come home after some rehab and has had adaptations made to the house. We paid 3k for a stairlift, they rarely used it and we ended up paying for someone to take it away for scrap plus they narrow the stairs quite a bit. At some point the doctors and therapists will need to think about how much he will be able to do in the future and he will be assessed for all his care needs. They may suggest rehab off the acute ward or a few weeks in a community bed or carehome, he will need to be allocated a social worker. If he is able to go home then ask for a home environment visit, maybe a hospital bed downstairs with a air mattress, chair, commode, carers coming in, community speech therapy and dietician to monitor his eating and drinking safely. It sounds like he still needs a lot of care and your mum is upset and frightened, maybe the staff could help her or the Chaplain if shes interested. Would she agree to seeing her g.p. and asking for help with this.

MereDintofPandiculation Wed 30-Jan-19 11:31:24

If he comes straight home from hospital, then rehab at home is also a possibility.

Be prepared that hospitals work on an hour-by-hour basis, so if you get a decision that he's going into a CIC bed or for home rehab, it'll happen today, or at best tomorrow. Makes it very hard for you to plan things. You may have to put your foot down over some suggestions - the discharge team's priority is to clear beds for new patients to come into.

Make sure you reserve your time for things only you can do - decision making, planning, ensuring communications are working, emotional support. Don't get yourself bogged down with things that someone else could do - personal care, cleaning etc. Be very firm about the amount of regular support you can do - even though they live close, make sure that it's understood that you won't be "just popping in" every day, or available to deal with "emergencies".

Above all, don't have any guilt about being "selfish". Unless you maintain your own health, you can't help anyone else. So put yourself first.

BogstandardBelle Wed 30-Jan-19 19:39:14

It’s very hard. Something that took me by surprise when DMIL was diagnosed with osteoporosis and Parkinsons was how resistant both she and FIL were to having any vaguely medical aids installed in their place: they really didn’t want it to “look like a hospital” and would prefer not to have had rails / handles etc installed. It took having an occupational therapist come round and tell them “officially” what they needed to convince them. Maybe that would help?

MintyCedric Wed 30-Jan-19 20:52:58

Thanks for the replies. TBH I've just been too knackered to respond.

Went in on Saturday and he had a really bad chesty cough, difficulty breathing, high temp and BP...actually managed to get on call doc up to him on a weekend! Sped off for an x ray and diagnosis of chest infection, so he was on oxygen and ABs for a few days which meant no brace or physio.

Infection is clearing up nicely now though and got to hospital just in time for physio rounds today so saw him walking for the first time in 2.5 weeks grin, albeit with a frame and physio holding him up but still...He's also off the pureed diet and thickener in fluids - thank God!

They say he is now medically fit for discharge and have made a referral for a bed at a community rehab unit, which will be much better for him, although we've had to put our foot down about location as only 1 of the 4 in the area is actually near enough for mum to get to independently.

I've put in a application for reduced hours at work until the Easter holidays so will hopefully find out about that tomorrow. If they agree it will make life so much easier.

Mum is really struggling emotionally with being on her own. I've offered for her to stay with us as and when she feels the need but we don't really have room and can't stay with her as we have pets. That said we are literally 3 minutes walk away and she is trying to be brave about it all but still tearful and anxious and has had a couple of panic attacks.

I am absolutely knackered, haven't missed a day at the hospital and am up between 5-6am and getting in between 8-9pm most days, but at least we seem to be moving forward a tiny bit.

thesandwich Wed 30-Jan-19 22:07:08

Minty sounds good progress for your df. But please try and ease up yourself now...... you cannot go on like this and need to keep something in the tank.

MintyCedric Wed 30-Jan-19 22:37:35

I know...I'm having counselling myself at the moment for stress management and self esteem issues.

I just feel like if I'm not spinning all the plates, all the time I'm lazy/useless/failing.

Managed to get home at a sensible time tonight though, had a bath and a glass of wine and a fairly healthy dinner.

DD is at her dad's on Saturday so have did to mum that unless there's a dire emergency I'm having a day off everyone and everything.

Naturally this is now the day they've pencilled in for Dad to be transferred confused!

MereDintofPandiculation Thu 31-Jan-19 16:21:24

I just feel like if I'm not spinning all the plates, all the time I'm lazy/useless/failing. Oh dear! You really must be kinder to yourself! What would you reply to a friend if they said what you just said?

But in terms of pure practicalities - it won't suddenly get easier when he goes to rehab, and later comes home. You'll find you're spending a lot of time managing things (my peak was the morning of Christmas Eve, with 12 phone calls either from my Dad or related to my Dad). So you really do need to take time for recuperation.

MintyCedric Thu 31-Jan-19 19:37:03

Well predictably my request for reduced hours has been turned down.

They 'may be' able to give me a Friday afternoon or a couple of mornings if necessary but have suggested I wait and discuss it again once dad is moved.

Friday pm will give me an extra 3.5 hours (we finish early on Fridays anyway) in which to cram everything. Mornings will be largely pointless as far as dad is concerned as visiting hours at the rehab units are 2.30pm - 5.30pm and 6.30pm - 8pm.

If he gets the one nearest to us (and we have stressed that it will make life incredibly difficult if he is transferred elsewhere), my mum could probably visit on her own and I can do 6.30 - 8pm. Anywhere else and we'll be unable to visit during the day at all and its possible I'll be doing a 30 mile round trip of an evening so he gets to see someone, after a full day at work and at the expense of having any time with DD.

I appreciate it's a pita when someone is put of the office and wasn't expecting them to agree to what I'd requested straight off the bat but a bit more understanding and flexibility would have been nice. Could also have done without the (no doubt well meaning) platitudes about how strong I am and how amazingly I'm coping...it's not as if I have another bloody option!

Anyhoo, another flying lunchtime visit to Dad as had commitments this evening. He was sat up in his brace, not dozing off for probably the first time since he was admitted and his speech seems to be improving a bit although it goes backwards when he's tired.

I know he would understand if I went in less, but I love him to bits and want to be there for him as much as possible. TBH I'm feeling guilty as he's been such a curmudgeonly old bugger for the last few years that I'd kind of given up on trying to get him out and interested in stuff.

And as mum as mum drives me crackers at times, I want to support her too. One of the most upsetting things about this has been watching her struggling to cope, particularly with having to spend so much time on her own.

JaceLancs Fri 01-Feb-19 08:44:27

Many sympathies Minty I’m still struggling along myself
Agree with other posters - make time for yourself
I allow myself every Saturday off visiting DF and will even try and screen calls from DM that day too
I’m lucky in that my job is very flexible however still have to put the hours and more in (on average 45-50) but at least I can work when I want
I started at 5.30 this morning which means I can grab a few hours this afternoon to visit DF and feed him
I hope once your DF gets into rehab you’ll see big improvements in my local area they won’t offer rehab at all unless they think there is a realistic prospect that it will work very quickly!
Take care with DM though try and encourage her to make decisions as my DM has just opted out and that has just added to the mental load

Grace212 Fri 01-Feb-19 10:53:29

OP my dad was in hospital a long time, I didn't go every day as it was too far and I wasn't even working. You might find you really do need to keep something in the tank otherwise you won't be able to help.

mum and I took turns with days because of helping feed him etc etc, plus all the general running round and dealing with docs etc is so tiring.

really sorry work turned you down.

MintyCedric Fri 01-Feb-19 12:34:41

mum and I took turns with days

This is what I'm hoping for ultimately, but mum's anxiety is getting the better of her a bit and I think she slightly enjoys playing the dependent old lady card (this is a very handy woman who will still attempt to do her own DIY, including electrics and plumbing with the aid of WikiHow and a You Tube vid!)

That said she's never been great at being on her own which is a fairly major issue at the moment. I don't feel so worried about Dad now from the pov that he's medically ok, what pain he does have is managed, and he's more able to look after and speak for himself in terms of eating, drinking and personal care. He's also much more laid back and wouldn't mind me not visiting but I worry for his state of mind when I don't as he doesn't seem to make much effort to occupy himself otherwise.

On the upside I am really enjoying work at the moment so although I'm a bit narked about the situation I am at least having fun while I'm here.

MintyCedric Fri 01-Feb-19 12:40:48

JaceLancs flowers. 45-50 hours a week is massive, although I sometimes wonder if I'd mind changing up my hours for more flexibility. Do you have much in the way of support? I had to see my XH at a school event last night and he didn't even bother asking how dad was angry. At least I don't have to deal with his BS alongside all this.

You're right about the decision making. Sometimes I feel I should be doing more, other times I feel it's good that I'm kind of 'forcing' her to be independent.

I'm also aiming for the day off tomorrow...we'll see.

JaceLancs Fri 01-Feb-19 15:18:27

I have DS 25 who lives with me and DD 27 who is not far away they are both fabulous support mostly emotional but quite handy at pouring me a large gin when required!
DD also does some paid cleaning for me which helps a lot

hendricksy Fri 01-Feb-19 15:30:25

Do they have money / assets ? They will have to move into sheltered care if so . I don't really understand why a lot of people are so soft on their parents . I have just my mum left but she had enough money assets that I will pop her in a care home / sheltered flat when the time comes. We have already viewed some and they are lovely with company and things to do along with onsite care . She downsized from her very large house when dad died which was the right thing to do. I will manage her but won't care for her ( I have a son with sn ) ... if they don't have any money / assets then there will be care available ..

Grace212 Fri 01-Feb-19 18:07:04

hendricksy, are you on the right thread? I don't think OP parents need sheltered care yet but there's a couple of threads going on where it might be under consideration.

MintyCedric Fri 01-Feb-19 18:13:32

If dad makes a reasonable recovery and they can either make this house safe for him (ie stair lift, downstairs loo/wet room and possibly bedroom), or find a suitable bungalow within budget (possible if my mum let's go of her Hyacinth Bucket streak!), they'll be fine.

It's the recovery stage and putting either of the above options in place that will take time and effort and be tricky.

Mum has already looked into a sheltered complex nearby which she'd like to go to if she's left on her own. Dad is considerably less fussy and much easier to live with so if it happens the other way round I'll cross that bridge when I come to it.

Jayfee Fri 01-Feb-19 18:16:41

There is a thread of people giving advice and support to each other about caring for elderly relatives.

Jayfee Fri 01-Feb-19 18:18:05

If my daughter wrote about popping me into care I would be very angry.

MintyCedric Fri 01-Feb-19 19:32:44

I don't think I'd be too thrilled either Jayfee!

In some ways though this is the problem, current (hopefully temporary) situation notwithstanding they manage ok and they don't need care.

What they do need, or would at least very much benefit from, is emotional, social and some practical support, and whilst you can pay for the latter one, the former two are not so easy to outsource.

Iflyaway Fri 01-Feb-19 19:54:58

If my daughter wrote about popping me into care I would be very angry.

On the contrary, I would never let my DS have to basically give up his life to take care of cantankerous (sp!) demented old me when (if) it should come to it.

Did it for both my parents as a LP, lost my job due to it and got a burn out.

I didn't give him life to take care of me in old age. I'd rather be surrounded by carers in a jolly old people's home. (They are not all dire).

Jayfee Fri 01-Feb-19 22:39:18

I would never want my children to give up their lives for me but unless I am demented I will make my own life choices. However,op I hope you get good advice and that your mum team see she needs to do her bit.

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