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I'm a terrible person, can't cope with caring anymore(72 Posts)
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.
I have no useful advice. Your situation sounds so hard. How are you going to manage when you have a newborn? Your husband needs care not from you.
I don't honestly know. i guess mat leave will help because I won't have to worry about work. By then the extra care for DF should have kicked in, but he'll be self-funded by then as his property exemption will have run out (I have financial POA, there's nobody else to run his finances).
I'm worried DP is sicker than he's making out, he's pretty good at suppressing pain and illness but he's acting odd. I don't think the IV antibiotics are the right ones but he's on them until the end of this week with no appointments in the meantime.
Congratulations on your pregnancy. I dont know where you are OP, but in our city there is a carers organisation, which puts carers on touch with help, support and can advise on lots of other issues. There will be other people who understand how difficult it is to care for others while coping with everything else that can provide somewhere for you to let your stress out. Our city also has a service where volunteers pop in to sit with people in need of care while their carers have a break for a few hours. Sending 💐💐💐 and hugs xx
Hi op I've got caring responsibilities too and it's bloody hard work isn't it.
Firstly congratulations on your pregnancy! You are going to have to make time for yourself at some point, especially further down the line when physical tasks prove difficult.
I have a ds with aspergers and am showing signs too ( have done the online tests aswell ) and am looking after my nan who has dementia though at the moment not diagnosed due to her moving areas and our borough is swamped with referrals.
I feel like you, I get it. Honestly I do.
But you have the extra issue with your dh, I don't know what to say to that, I'm really sorry you're going through this, it's hard to get a second to yourself isn't it? But- you must find time for you. You're no good to anyone if you're run down and feel like you do.
I resent my nans condition sometimes then feel so guilty.
With ds, he's just turned 13 so I have the lovely hormones to deal with too!!
I suffer myself with severe anxiety and also have a chronic health condition which means I'm in a lot of pain.
I found adult services were helpful ( nans social worker wasn't ) and to get as much help and advice possible; for example my nan goes to a centre twice a week. Is there something like this you could look into?
Anyway sorry for such a long post, I just wanted you to know you're not alone and the feelings you have are completely normal.
Where about in the country are you op?
Thanks for the responses, it's good to know I'm not on my own being awake through the night.
toriap my local carer's association have given me a load of leaflets, but the local carers' cafes are all run on weekdays during working hours so getting that kind of time out is tricky, especially when I'm taking so much time away from work already. Age UK do a similar sitting service here to what you mention.
MissRabbit I'm sorry you're going through this too, that sounds very complicated for you, especially with your own health issues and ds's hormones. You are so right about the resentment and guilt. I'm even angry that I am too scared to tell DF about the pregnancy in case anything happens to it and I then have to tell him (over and over) that it's lost, and cope with his upset. I've got a day centre, a befriender and a gardener sorted for DF, I just need to hand over the meds collection and weekly shopping and breakfast/lunch box preparation to someone else because I am really starting to resent that no matter what else is happening in my life, no matter how bad my migraines or morning (all day) sickness are, I still have to get that all sorted on specific days/times. I don't drive so it can be expensive and exhausting.
I'm worried about how much I am resenting DP for his health issues. We've been together over 15 years, and he's had diabetes for about 13/14 of those. He was overweight when I met him, not massively so, but struggled to do anything about it, but now he's dangerously overweight, very limited movement, lots of associated pain and conditions like his leg ulcers. Yet he won't help himself and I get so cross with him. I've tried every tactic under the sun over the years. Cajoling, empowering, supporting him through his diabetes clinic, dieting with him, paid for us both to go to weight watchers (I lost 3 stone, he gained a stone), getting angry, threats and ultimatums. Sometimes it's like he's deliberately sabotaging himself and he acts like the whole world owes him. I feel so trapped. I want to walk away, leave him to it, I know it would break both of us but I don't know how to cope with the relentlessness of it all anymore.
I'm lying here in the spare room, listening to him crying out in pain in his sleep and all I can do is cry because I've been awake since 3 and it's Monday and the whole bloody treadmill is starting all over again. He doesn't deserve me, he needs someone with so much more patience and selflessness than I can give.
Time for you to be a bit selfish. Tell him to seek help for his diabetes and leg ulcers. Not sure if redressing every 2 h helps actually, I am thinking the dressing he's on is not doing the job more like. He needs to see somebody. Today. Before he loses his legs.
Aim to have your dad in a nursing home before you give birth.
And a hig from me, you're in a hard place, but you've got a little bundle of joy to look forward to!
Lovely, you are not a terrible person. You are a very kind, loving one who is doing the best she can for everyone. I am in complete awe of you. Not everyone can be patient 100% of the time. I cared for my DH for a long time and even though I didn't have everything else you have to cope with, I still had days where I was not as patient or nice as I could have been. I wanted to walk away so often because this isnt the life you plan is it? All I could do was go to bed at night and say, I'll try again tomorrow. I have to go to work now, but I will check in later.
Fencingwire DF doesn't need a nursing home, he's mobile and functional with care needs to manage his memory and judgement issues. Dementia has a massive scale from start to finish. DF is only about a third of the way down that scale. You are right that DP's dressings aren't doing the job. They are the largest, most absorbent pads the gp surgery can provide. He has no skin from his knee to his ankle, all the way around, and the whole wound is heavily exudating. It's not that he's not seeing anyone for his diabetes and leg ulcers, he is, that is why he is on IV abs. The surgery don't appear to be recognising the extent of the issue and aren't giving him enough dressings to cope. Just piling on more cotton wool or whatever doesn't help because the exudate physically burns when it's kept in contact with the skin, that's what's caused such a massive wound. It started off as a small ulcer. Sorry to sound defensive but the only way to prevent further maceration and damage is to physically remove the exudate. There are no better dressings that the surgery can provide (we've been through the whole range apparently). Thank you for the hug though. I'd love one of those right now.
How can dp help himself ? Especially long term, with a baby coming he really needs to take responsibility for himself. Has he just not bothered managing his diabetes?
Nowhere, you are doing an amazing job, you need more help. It's too much for one person. Back to gps, please. Big cuddle from me too, and many congratulations on the baby.
Thank you Rick. I''ll give DP instructions to try and get seen today or tomorrow.
Salvage his diabetes is under great control just now, his nurse was very pleased at his last appointment. Unfortunately it's a progressive disease that does come with a host of complications over time. DP now has those complications. The nurse concedes, and even I have to admit despite my frustration and anger that the better his blood sugar is controlled, the harder it is for him to lose weight. Add serious lack of mobility onto that and you're fighting a very difficult battle. He has major issues with taking responsibility for himself though. This is where his 'world owes me' attitude really lets him down. He won't fight for what should be fought for (doesn't see why he should) but will lose his rag over things that barely affect his life and he genuinely has no control over (eg other people's poor parking). I've given him ultimatums to sort his life out or bugger off twice. The first time I couldn't follow through because my DF became critically ill so DP and I pulled together and just dealt with the situation, then the second time was in February/March, just before this latest leg flare-up. He's so beaten and depressed. He had PTSD when I met him that he never got treated and I honestly don't think he's ever properly got over the depression that came with that.
Sorry for the rambling posts, I'm reading them back and realise I sound like a mad woman. I'm swinging between being so angry with DP, and being defensive and angry for him.
I'm going to have to get ready for work now, I won't be able to respond until I'm back this evening as no mn access while I'm there but thanks so much for all of the replies (even the ones I've been defensive about) because I don't feel so alone now.
Is dp getting a nurse come and visit at home?
You're not being selfish, it sounds very draining and hard for you. At some point you are going to have to sit down and have a very honest conversation with your dp and find a way to reduce the stress on you.
When you have a new born you are simply not going to be able to care for dp and baby, let alone df. You need to start making changes now with your dp just like you are with your df.
Do you think these people may help with some advice www.carersuk.org/help-and-advice/talk-to-us
I'm trying to think of a way to reduce your stress but I have little personal experience. Your dp needs to take charge of his health, but that has to be his decision. It can't be that if he chooses not to help himself with weight loss and diabetes/wound management that you then pick up the slack. There simply has to be another way or you will not cope. You sound like you've had enough already.
Perhaps you could speak to the doctor yourself and get their advice on what help you can get at home.
Sounds like he needs therapy to deal with his mental health issues. You can only nudge him towards this, he has to find this route himself. You could mention how you 'know' someone who was really struggling with their mental health but got help for it. Sow the seed as it were.
Massive massive hug from me, I'm tied up now ( thankfully not literally!) and will post again later.
I also wanted to say that you're not a "terrible person" please don't think that ever.
We're all here for you xx don't care if kisses are frowned upon
Your focus needs to be on the child, who essentially is going to have only one parent.
Your partner is more interested in being a passive victim/martyr than a functional adult. People die every day of his combination of health problems and if he chooses that route by not taking charge of himself, well, that is not your fault. Even if he survives, growing up with him for a dad is going to be no picnic for the kid. Add a super stressed mom and the child will be off to a dismal start.
I realize you don't want to break up but you owe the baby 100 percent as it has no control over its circumstances. You do, and so does your partner if he chooses to be an adult. Good luck, I hope you find help for your father as well.
Looks like the restrictions are lifted for the lunchbreak, nice to know I can mn a little from work
Rickety there's no nurse coming out other than the daily IV nurse, but she doesn't do wound management or dressings, just administers the antibiotics. You are so right when you say it has to come from him. All these years I've been trying to do things for him or on his behalf and it just hasn't worked. His nature is to sit in his little victim box all 'woe is me' and let everyone else pick up the pieces because it gets him down to much to think about it himself (his actual explanation, not me projecting). I really have had enough. I'd had enough when I gave him the first ultimatum this time last year. A GP appointment for me might well be the way to go, see if there is any additional practical support that I can access. I know when the baby comes along he or she will quite rightly become my number one priority and DP is just going to have to look after himself.
It all came to a bit of a head this morning - I'm not a morning person, and coupled with being awake crying from 3am I wasn't at my nicest. I told him he's got to improve how he looks after himself - again he started down the track of how he's doing everything he can - so I stressed he's got to take painkillers to help his back, which will make changing his dressings easier and that he's got to do that more frequently. He's actually been sitting there, letting the exudate form a huge puddle on the floor where it's soaked through the dressings, then mops the floor a couple of times a day rather than change the dressings!
Re the MH issue, when I first met him I was in a poor state with my own MH. I'd been in and out of medical and MH hospitals, on a wide cocktail of prescribed medication, went to group therapy and was under the care of a psychiatrist. DP knew all this and still took me on. Through the care I received, I was able to get past my problems, move on, and I've never looked back. He knows it can work. He just refuses to believe it will work for him. It's definitely a personal choice though, so I've never pressured him to go, just made numerous suggestions over the years.
In positive news, DP has a nurse appointment for Wednesday morning, has picked up an extra batch of dressings from the pharmacy and has another prescription on order to collect on Wednesday. I've enveloped up a load of correspondence on DF's behalf addressing several outstanding issues/complaints which I'll post this evening. Definitely not firing on all cylinders today, but it's better than nothing.
Thanks so much MissRabbit. I know people go through so much more than me and somehow manage to stay strong, I do feel I'm letting the side down by wanting my me time as much as I do.
Lilac your words have really hit home. They hurt, all the more so for being true. Once DP's leg is sorted I'm going to have to talk to him again about my ultimatum I think.
I know this is only Sussex but would any of these be reachable for you?
I know of many people with diabetic ulcers which just didn't get better under the nhs who have healed with their treatment.
I admire you but eventually putting other people's needs before your own
for too long will lead to a break down. I had to rescue a relative of mine from the same situation recently.
There is such a thing called Taken For Granted. Another thing is the more you do the more others will let you do especially the public services
and other family members.
I didn't mean to hurt you. You only get one chance to start the baby off right. Stress and strife. in its early life will shape its neurological connections and so much more.
I worked with a man who neglected his weight and diabetes. He lost both legs at the knee, both kidneys and his gallbladder. And died young. Your husband presumably agreed to father a child, he needs to stop thinking only of himself. Or you need to leave and create an environment for the kid. You are not a bad person for doing that.
Me time is what I crave most op!! ( and I smoke ) but would take me time over a cigarette any day.
Don't feel bad for wanting time for you, it's such a lovely feeling and doesn't happen often so grab any chance you can.
For what it's worth, I think you sound amazing!
Be back later
I've had some experience of this - has DP been referred to the tissue viability service? There are so many new dressings out there now, a good nursing service will go through them all trying them out.
My DH has diabetes, they sound very similar in outlook. He's waiting to have bariatric surgery but not sure if it will go ahead in the end. He also refuses to chase the doctors etc on anything, at one point he'd been on the wrong meds for about 3 years and he refuses to question our GP. Latest is he's losing skin from his fingers, I said go to GP over and over, but he prefers to leave it and say that this means he can't do anything in the house ...!
I'm surprised if his legs are so wet that he isn't known to DNs. Any chance you could contact GP? As a nurse I'd be concerned if someone was doing their own dressings every two hours- I'd be querying whether he had appropriate dressings and standards of care .
You sound amazing. Hope you get some support and you time
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