What to do?: Sorry for the long post. Been away... - LUPUS UK

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What to do?

Hollydebs profile image
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Sorry for the long post. Been away from the site for a while as It’s been a depressing 5 months. Often feel if someone above has it in for me or perhaps I sinned in a previous life.

In Oct 17 had nasty fall. Dislocated my shoulder and fractured my elbow. Also damaged my knee which still has numb areas so am hoping damaged nerves aren’t permanent as knee in last few weeks keeps trying to give out!

In Dec 17 Mum took a tumble down the stairs which was terrifying for me. Mum is agoraphobic and hasn’t been out in over 20 years so always wandered what would happen if needed hospital, dreaded it in fact. Anyway me & my Uncle convinced her to let us get medical assistance and ambulance took her to A&E. She had dislocated her hip.

Hospital did an operation and put a long nail in to sustain and as her bones were not strong they caused a fracture in 3 places. Instead of re fixing this they decided to let nature take its course which means up to 12 months for recovery and they can’t even say she’ll be back to how she was before.

While mum was in hospital they also found a brain tumour and she also leukaemia. As mum refused further testing we don’t know what strain she has.

They released her after 5 weeks, home Jan 18 and as I suspected she has refused all follow up appointments. She will not go back to the hospital. Thinks she’s afraid she’ll never get back out as took a lot for her to go in, in the first place.

Got her GP to visit, he is aware of her conditions and is monitoring.

Mum has carers 3 times a day but as she has no mobility it’s the times in-between that she feels it the most. She can’t get used to using a pad and not being able to do things. She a living upstairs for the foreseeable.

To top it off Devon County Council want Mum to contribute over £300 to her care and she barely has 2 coins to rub together. She gets basic pension and basic pension credit with attendance allowance. Unbeknownst to me they don’t take some bills into consideration.

This is legally their right so I’m being told. It meant that if she paid the council for her care then she would rapidly go into debt.

We had a big discussion and now have had to take the hard decision to make her bankrupt so DCC can get paid and mum can get the help she desperately needs.

I keep asking myself why me.

Im finding that I’m doing more and more to assist her when I’m not working my part time hours and the body is taking its toll.

I have Lupus with an overlap disease of Sjogren’s. I’ve always suffered with the usual aches and pains but one of my majors is fatigue which if possible is getting worse probably as I’m now overdoing it. I’m now needing to sleep more at odd moments in the day.

It’s hard to switch off when it’s someone you love and I have no idea how to juggle the 2 and take care of myself at the same time. I feel almost that I must come second to help Mum but on the other hand I need my strength to help in the first place. Viscous circle.

I’m on Hydroxychloroquine which doesn’t do much for me these days. Tried me on Aziathroprine but had such an adverse reaction to it, it had to be stopped. Now live off Hydroxychloroquine & Tramadol which I know isn’t the answer.

Thought about giving up work and becoming her carer but this doesn’t pay the bills.

Im not a social butterfly by any means but now I feel as if I have no life. My family are the type that have more words than actions and you literally have to beg to get assistance. Assistance that you then feel guilty for asking for.

Are any of you caring for a relative. How do you cope?

Any tips or advice as always gratefully received.

Take care, Debbie xx

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Hollydebs
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whisperit profile image
whisperit

Blinkin flip Debbie,

That sounds like an awful lot to cope with. Sticking to some brief, practical thoughts:

Is it practical to be aiming to get your mum mobile? I imagine that she would need psychological support for this (as well as to help her deal with everything else), so is she in touch with the CMHT (with a history of agrophobia that might be possible?) If not, a community Occupational Therapist would be well worth contacting, as they could do an assessment of aids and adaptions AND provide CBT type support for the psychological side of things. She should have been discharged with some sort of physio and/or OT support in any case. Otherwise, there is a (closed) support group on FB called "Broken Femur Victims Unite" which you might find helpful for ideas on coping with the recovery period of femur fractures.

For you, my main question is whether you have been in touch with the local Carers support group? The Devon one seems to be here devoncarers.org.uk/

I would strongly recommend doing this as they will be able to advise you on the financial side of things as well as other support, including respite. (you probably know that you are legally entitled to a carer's assessment by social services, who are then also supposed to draw up a plan to help meet your needs as a carer) They will also have additional links to specific support for carers with people with cancer.

I guess you will know mos of this already, but do make sure you take advantage of some of the respite activities that are on offer. Looking after yourself has got to be a priority in all this.

Keep us posted x

misty14 profile image
misty14

Hi hollydebs

What an awful , tragic story about your mum and such a stressful situation for you!. I'm really sorry your going thru this, and hope you get help for her soon. I could just add that a visit to the cab would help you on the money side of things, deciding bankruptcy and whether you should claim caters allowance. They will help you do the forms.

To help you care for her could another family member help with visiting etc or are you the only one who is nearby?. With your health you can't do this alone and you do need to look after yourself too !.

There is the possibility that in the Spring the local C&C lupus group might be trialling a get together in north Devon so it's a chance to have some different company!.

Do take care and hope things improve for you. Keep us postedX

Hollydebs profile image
Hollydebs

Thank you for all your replies and listening to my long rant!

Just feels like I’m on autopilot most days and I’m not sure how much more I can take.

On plus thanks to a lovely reply I have made an appointment with Devon County Council to be carer assessed. To see what they can do for me.

Luckily it’s conducted in my own medical centre which isn’t far from me so that has made it easier. Not sure will get anywhere but won’t know unless I at least try.

Me & Devon County Council Re mum are still going backwards and forwards by email nothing getting done. They have now decided they’re are going to backdate the bill to when mum was released on Jan 15th so we already owe 5 weeks and not even been billed yet. No idea where money coming from.

For a service that deals with adult social care they are not very sympathetic on the word disability.

I have also requested a face to face with someone that side as well but as yet no response.

Am Hoping my assessment will find some help as not sure what my next move would be.

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