I'm a terrible person, can't cope with caring anymore

[NowhereToRun]

I should be happy. I'm pregnant after multiple IVFs and multiple losses, but no chance to enjoy that because I have to care for my DF (dementia) and DP (diabetes complications, latest being chronic leg ulcers). DP currently off work because leg tissue so badly damaged. Needs frequent dressing changes each day (every two hours minimum) but he can't do this himself because of other chronic pain and GP surgery are having difficulty recognising/providing for this. I'm worried sick for him, he was in hospital last year with something similar and wound management as an inpatient was dire. This year the wound is worse. He's refusing to go to hospital because of last year's appalling treatment but can't care for himself at home .

I've managed to hand over much of what I do for DF to the LA-provided carers, but they are cheapest agency and struggling to get them to follow care plan. Lots of complaints and monitoring required, but no other agency will take on DF's needs as can't accommodate the number/timing of visits required. There are things I haven't yet been able to hand over (meeting social worker this week to try and get the ball rolling on that - long battle, carer's assessment request submitted initially in December last year, only happening now because I said I was refusing to provide the care I do any longer, duty of care, vulnerable adult etc). There are some things I can't hand over to anyone (accompaniment to medical investigation appointments).

So I work full time, doing an average of 5 hours' overtime a week to make up for lost time spent on attending appointments for myself, DP and DF. I spend 2-3 evenings a week and most of Saturday with DF, and the rest of the time doing what I can for DP.

I'm totally exhausted, at the end of my tether, snapping at the people I love the most and want to care for. I have awful insomnia, a desperate need to have time to myself and to feel loved and looked after and feel so selfish for this and I just want to run away from it all. I really struggle with social commitments at the best of times (online aspergers tests have been very revealing and insightful) but my coping mechanisms are burnt out .

Sorry for the long post, I have no-one I can say this to and just needed to get it off my chest.

This may not be helpful but there are more effective ways of managing leg ulcers than bandaging, expecially at this level of exudate. Next time you have a chance, have a look at pneumatic compression and negative pressure wound therapy and ask your DH's medical team whether they have considered those options.

Pneumatic compression: link

NPWT: link

I'm drumming my fingers and twitching waiting for DP to get home. His nurse's appointment was scheduled for over an hour ago! I'm hoping this is a good sign, and he's being listened to.

Once again, thanks so much for even more great suggestions. Thomas your post was incredibly helpful - I emailed links to DP for the pneumatic compression, NPWT and juxtafit sites but I don't know if he picked them up in time for his appointment. Most of DP's minor wounds can usually be self treated with inadine and mepore, which is how we started treating this, but they pulled him off this treatment a fortnight ago as they were worried how long he'd been on it.

Burning the GP has told DP straight out that some of his tablets will make losing weight hard, and some will make him gain weight! DP isn't sure when he last had a proper medication review so I'm adding that to the list of things to get sorted. Thanks so much for the Juxtafit info, they really do look so much easier. My only concern is the leg ones don't compress the feet, and the surgery nurses are always stressing how DP's compression has to include the feet in order to prevent forefoot oedema. I reckon if he was allowed them, he'd manage them so much better though.

Fingers crossed, don't! And just for once, the light at the end of this particular tunnel doesn't appear to be yet another bloody train

registering your post is a mine of information. I've spent some time this afternoon reading up on PIP and omg I think DP would qualify for both elements. I had no idea. It's driving home to me just how bad things are for him. It's come on so gradually, over so many years, that we have both accepted his limitations as the new normal. It hadn't crossed my mind as being important, for example, that DP can't use public transport. That he can't cook a meal without being in so much pain that he has to have a stool by the cooker/sink. That I'm attending his most important medical appointments with him because he's so foggy with pain or painkillers or both that he can't remember the information he needs to give them, nor retain what they tell him. Also the time I spend doing things for him like wound dressings, checking his feet and legs for injuries, helping him shower, helping him with his physio exercises, even putting his socks and shoes on for him. Cripes, things suddenly seem so much worse and so much better at the same time. Worse, because my eyes are finally open, and better because I know we can apply for help.

Sorry, another ramble.

The blue badge looks nigh on impossible to get without proof of PIP, so I think that's going to be our first port of call. Still on the benefits theme, DF is definitely getting the right level of attendance allowance as there are no nighttime needs. I know this is a trigger for getting the higher rate so it's on my radar for when things change.

Elspeth the five weeks is more through choice and a need to use up annual leave. I'm having a Christmas baby, and my leave year runs January to December. I will have two weeks outstanding when mat leave is due to start that I am obliged to take. This will be my only ever term pregnancy so I'm determined to enjoy it as much as possible and I'll do that better at home - working on the assumption DP will be back at work by then (he'd flipping well better - I will need him to be on his full time wage, not sick pay!) so I will have peace to enjoy my last weeks of pregnancy. I'd say I can't wait, but I really want to enjoy every single week between now and then, too!

Ah well fair enough if you have to use it up.

I went off work 4 weeks before my first cos of spd but then I went 10 days over! I was bored to tears by the time I actually gave birth lol. But you may enjoy it more!

I'm a DN in the West Midlands and would absolutely urge you to either self refer him or get him to refer via his GP. Are you in Brum? If so I'll pm you the telephone numbers for the service X

Well that wasn't as helpful as it could have been. IV antibiotics have been renewed (same ones even though they don't appear to be doing anything, apparently they can't change them unless today's swab comes back and indicates something else should be administered). The district nurse service is 'strapped' and will only be used in cases of dire necessity though they have arranged for one to come out once on Sunday, and for DP to go into the surgery on alternate days next week. They're trialling a seaweed dressing under his pads, but they are apparently £1000 a box and he has to see how they go and call up on Monday for a prescription if what the nurse put on today improves things. He's only been given pads to get him through the weekend though - no seaweed dressings. They'd never heard of the dressing recommended by the IV nurse (hell I've heard of it, so it can't be that outlandish!). One of the nurses had heard of Juxtafit but wasn't in a position to recommend it or not. They can't refer to tissue viability because the wound is still too wet, apparently they have to get the exudate under control before tissue viability are interested.

DP came back from the appointment all chuffed feeling he was trying something new and had a plan forward and a DN appointment for Sunday and had raised all the things we'd listed together, and now he's feeling like shit because I asked him a load of questions and he can clearly see that I don't think they are doing enough. I really am a terrible person because I can't just let him have his happy moments, I don't even know when I'm tearing them down. I should just leave well alone.

Cross post honey - south of Brum, we're in Worcestershire. I don't know that phoning is going to make any difference after what DP's been told - they stressed to him how strapped the DN service was and that referrals were reserved for people who are housebound/really unable to help themselves and they told DP that what he's been doing is just fine. They don't see that he's not changing the dressings because he's in too much pain and I think DP felt he couldn't make an argument for getting a referral. They are sending a DN out on Sunday but i think that's more because DP got upset saying I was struggling.

What's the dressing called?

Nowhere I suggest you yourself contact the district nurses yourself. And ask for the number of complaints of the surgery/local hospital authority you're under and complain. He's not getting the care he's required. He's at risk in my opinion.

Yeah. You do have to be a bit forceful on the old delegation front I'm afraid.
If they see any chink of vulnerability they'll think it's ok you'll do it - their budgets mean they kind of have to.
But it's not reasonable to expect you and DP to keep muddling through any more.

Don't The recommended dressing was Aquacell Ag, not something he's ever had before but I've definitely seen it around somewhere because the name is really familiar. DP doesn't know what the seaweed dressing was called, it was just something they had a couple of tucked away in a cupboard.

I have found the DN number for my local surgery on google so will give them a call tomorrow and explain the situation and see what they say. As ranty and angry as DP is when he needn't be, he can go all meek and mild at the worst of times, usually when he needs to stand up for himself.

DP's currently crying with the pain and his leg is bandaged up to the nines in a way neither of us has a hope of reproducing. The best he's been managing on his own is shoving a couple of thick pads under some yellow line. At one point he resorted to taping one of my tena lady extras to the bottom of the dressing where it was weeping most. pregnancy has the most unfortunate side effects!

I've apologised for making him feel bad and like he can do nothing right. He really did try his best today and he did cover everything that was on the list for him to raise. Surrounded by a number of nurses and a doctor in the room, in pain, I can understand why he didn't feel in a position to be pushy.

Ranty - nuh uh
Meek - nuh uh

Best approach is calm and assertive and achingly polite.
Fake it til you make it

Or cry. I've done that lots

We found some of the creams put on underneath the bandages were making it worse, something worth considering.

I can tell you now aquacel ag does not cost £1000 a box so they're literally lying through their teeth there. If it was so true it would not be prescribed. I remember my eyes nearly falling out my head at a box of manuka honey dressings being £70 for 5 dressings.

I hope you get sorted soon.

What painkillers is he on? Can these be reviewed?

Oh, good, you're still here

Evolving plan sounds good.

I went off works 2 weeks before EDD with DS1 who was then 2 weeks late so I had a lovely 4 weeks of feeling like a whale lounging about

Re weight gain or rather some diabetic medication making getting weight off harder: if he is not already considering this and as he is less mobile/active than I am sure he would like to be, has he considered a careful low carb diet?? No hunger/deprivation involved. Works for weight loss too
Just something else he might want to read up about.

I would highly recommend NOT being brave or overtly 'coping' in front of HCPs - nothing wrong with crying and making your distress quite known. I think men in particular can be quite bad at letting just how awful things are for them.

Of course apply for all benefits he and you might be able to benefit from. Get the CAB to help with that.
Re social care: of course things are dreadfully underfunded and underresourced, so I am not surprised to hear to talk about waiting times for assessment, never mind provision of care/support. Do be that squeaky gate and phone, complain, remind people you're still there etc etc. Hard work, I know, but sadly IME the most demanding, and not necessarily the most deserving get.

Lots of good advice re wound care, appliances and dressings.
Get a foot stool for next to the computer!

I'm so glad the info is helpful to you Nowhere. I do understand how it creeps up on you - I missed a few months probably that I ought to have been claiming because it hadn't occurred to me, and we go a long way before being ready to consider ourselves disabled.

So, apply for PIP. Don't hold back on how bad it is for him. Do some research on what the triggers for points are and make sure you mention all those that apply. Using a perching stool for cooking is a good example. Using a basin to lean on when you get up from the loo is using an aid for toileting, for example. Make sure you mention all the small things you do to assist, as well as the big things. Eg. Fetching pills to save him having to struggle is assisting with medication.

Don't rule out the blue badge. I didn't have PIP when I applied. All the PIP does is make their decision easier.

Keep an eye on the sick pay situation and make sure you claim ESA when it's appropriate.

Keep nighttime care on your radar for your dad. For my elderly the trigger was a patch when the lifeline call button got used several times after the last lot of carers had gone at 8pm, meaning we had to go out or the paramedics would have to, even though all she wanted was a cup of tea and some cream putting on her leg.

Night time care need doesn't mean all night every night, but just at some point during some nights.

And everything Pacific dogwood said, except the diabetes about which I know nothing.

Oh, and benefits can be backdated for some months, so state the actual dates things became this bad, not just whatever date you phoned for the forms.

Progress I've spoken with our integrated care centre, which has taken over from the DN's direct line, and they have booked a daily wound dressing appointment at home for DP starting from tomorrow. DP has also started taking the IV nurses up on getting a re-dressing done.

Turns out the seaweed dressing was the simple Aquacel (DP is adamant the nurse said they cost £1000 a box - seeing as Allevyn Ag were only £78 last year I really can't see this!) but he's contacting the surgery today for a prescription for Aquacel Ag Extra as recommended by the IV nurse. Yesterday's Aquacel extended the dressing life to 4.5 hours so it sounds like a worthwhile request.

No creams or anything being put on under the dressings, we/they stopped using sorbaderm about a week ago as there's no skin left to put it on.

Don't yesterday was his first prescription for painkillers: 30/500 Co-codamol. This was about 10 days after a GP told him to stop taking his OTC painkillers because they wouldn't help with the pain he had since it was caused by nerves. He's now basking in a codeine glow and the high that comes from relief from longterm pain.

Pacific DP maintained a healthy (as opposed to extreme Atkins style) low carb diet for the 18 months after he was first diagnosed, he managed to stave off all medication for that whole time. We still have the recipe books somewhere, I might dig them out and leave them lying around in opportune places. He'd just need to be v careful with his insulin. His main problem for any diet is portion control. He comes from an Irish family (he's first generation Brit) so was brought up with ridiculous portions and the idea that food = love.

DP is under firm instructions to stop 'coping' in front of HCPs with immediate effect. He doesn't have another scheduled appointment until Monday/Tuesday of next week so he's going to have to practice looking pitiful on the IV nurses and DNs.

He has a footstool, and is under instructions to use it more. It doesn't fit under the computer table, unfortunately, so he's just going to have to make do with watching Netflix on the big screen so he can have his leg up.

He's agreed to apply for PIP, the CAB help guide for completing the form is a godsend and made us realise there are so many more areas of his life affected than even I first thought. I also found out that he's able to apply to the War Pension Scheme for compensation for a disabling injury that occurred before I met him, which he never pursued at the time.

One more phone call to make today, to try and arrange hospital transport for DF for a medical appointment on Saturday. Yesterday's carer's assessment was a complete waste of time, at the start of it the social worker said 'you know you'll not get anything from this, don't you?' However I have now given them two weeks' notice that I will be withdrawing all bar POA/critical appointment attendance services, and they are just going to have to pick up the slack somehow.

Well done. Really.

Sorry to hear the carer's assessment was shoddy. Try again next year and hope for a better social worker. Or, if you the got the energy, request that it be redone by a more qualified social worker, quoting the above as evidence that it was not properly carried out. I'm saying this because I did waaaaaaaaay less than you are doing and qualified for a carers grant payment that was substantial enough to make it worth chasing.

Oh gosh well done, Nowhere, really very well done - and long may it all last too! Don't let little things slip (just this once and so on) or you'll be back to how things were.