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Best way to handle things... - Carers UK Forum

Best way to handle things...

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Hi there - new to the forum and looking for a little advice from those who might have gone through the same.

I'm been caring for my wife for some 8 years now - she has chronic back problems and struggles to do the basics on a day to day. She does have short periods where she is "ok" - that's "ok" for her, not me or you, and she is able to do bits and pieces or go out and about. However, these "bits and pieces" tend to knock her back down to the point where she's bed ridden for days on end.

The problem though is she is unbelievably stubborn and independent and wants to push herself to her absolute limits. She could be at a 9 out of 10 stage of pain, but she'll struggle up to her feet and stagger to the kitchen to make herself a cup of tea, for instance - which not only makes her pain worse, puts her into a foul mood which I, somehow, get the blame for.

When she's up doing the Brave Little Soldier act, I'm trying my hardest to get her to sit down and take it easy - so much so, that at times I feel like I'm a parent scolding a naughty child and my own frustration builds when she carries on regardless saying "I'm okay .. you're busy .. I'm up now .. " etc etc So, because I know she's independent, I relent to save getting in an argument.

When she gets to the kitchen, she puts the kettle on, does the washing up, puts stuff in the washer, makes a sandwich and every other domestic chore you can think of before heading back to her chair 30 minutes later with the pain now at 10 / 10 and a face on her like somebody has stolen her Space Hopper and, once more, I'm somehow to blame for that in her eyes as she's constantly snapping at me as though its my fault.

As I say, my frustration builds to a point where I eventually pop and snap back.

I have no problems with her being in pain and looking after her and doing the chores. I have no problems her being in a worse state if she's done something worthwhile (ie, yesterday we went out for the day with our son and knew that she'd pay for it today) - but when it comes to menial day-to-day stuff that is just an exercise in self-inflicted pain and misery, which she then takes out on me as though I was her own personal punch back - that's when I pop.

We talk about it and although she agrees that she shouldn't be doing stuff like that, 2 minutes later it's back to normal business. There's been the same discussion about it over and over and over for years but nothing changes with her.

Anybody got any advice on how to handle this situation because I'm getting close to the point where I've had enough.
I have a husband who is just the same, in that he wants to do everything and it makes me feel bad. He has no disabilities either! He just works very hard, and then comes home and wants to take over and wear himself out here too! I feel like he is taking my role away from me in some way, if that makes sense. Perhaps that is how your wife feels, she is trying to hold on to her "role" as wife to you. Then the pain is hard for her to bear, and she gets grumpy - with the pain, not with you, but she takes it out on you because there is no-one else. How to deal with it, I have no idea I am afraid. I have tried talking to my husband about how this makes me feel, but he just doesn't understand (and hasn't for ten years) and carries on ..... Image Hopefully someone else can be more constructive! Image
The only way that any of us can understand how others feel is to try to imagine ourselves in their situation. Your wife needs to understand how she would feel if your roles were reversed. Only a third party can help people understand this -- it doesn't work when you try to explain how you feel. If somebody (preferably from outside the family, and someone with 'authority', like a doctor) could talk to her and try to make her imagine herself in your shoes, it might start to sink in. That's all I can suggest. No doubt there is unacknowledged guilt on her part, but I wish people would CONFRONT their irrational guilt, rather than let it fester and poison relationships. Self-deception never helps anyone.

Would a serious threat from you to walk out and leave her to her own devices help to bring her to the realisation that she is making life impossible for you? It sounds as though your wife's disability should not affect her ability to think straight, so this is a different situation from what some of us face with charges who suffer from dementia: they are not rational, and can't help it, so one can't appeal to their commonsense.

I hope you find a solution, Jay.

Tristesa
I had a bad car accident and could hardly walk for 5 years, happily resolved with two knee replacements. I was a bit like your wife until I read an article about managing your own pain. It was a light bulb moment for me, desperately needed as the painkillers upset my stomach if I took many. Basically, you do very little for a few days until pain is as low as it's going to get. Then you do a little more the next day, and a little more the following day, each time checking your own pain level. Soon, it's possible to work out what you can do comfortably, and what you can do when the pain is increasing. I found that if I wanted to go out the next day, I could managed much better if the previous day had been quiet. I could then take a pain killer to get me through the day, when I got home I'd need to rest, and the following day needed to be quiet. In the morning, it was easier to have my tea toast and pills and wait for them to kick in before I did much. So I would sit in a recliner and do paperwork until 10.30, but which time the pills were working so it was easier to move. It is very wrong for your wife to blame you for her pain. She needs to take more responsibility for it. Has she been referred to a pain clinic? Has she been seen by an OT recently? When did you last have a Carers Assessment?
Hi there & welcome.

My OH has physical pains and also does too much and ends up in pain and ratty with me because of it. I have to walk away when it happens and have got better at saying it's not my fault and not rising to the blame. It's hard, but as people on this site have said to me, sometimes tough love is the kindest way for you and your OH. It's certainly better that ending in an argument.

Hope you find the site helpful.
Hi,
In the same boat with Hubs, he does too much one days then pays for it for days after.
His Physio taught him the 'Pacing' technique, do a little, rest for at least 20 mins, do a little more, rest again.
It does help, but Hubs is still stubborn some days!
Maybe an idea to look into, that way your wife can still do bits, but spread them out over the day rather than all at once.
xx
Thanks for the replies everyone .. it's appreciated.

I've tried everything to get through to her .. and the frustrating thing is is that she *knows* she should be sitting down and resting but she just has this unconscious need to get up and do things.

Sturdygirl - the pacing technique is something I've tried to talk to her about and she agrees in principle thinking it's a great idea - but when it comes to putting it into practice, she just forgets about it. I mentioned in my OP about as she'll, against my wishes, get up and go make herself a cuppa .. yet when she's in the kitchen she says to herself : "It'll only take me a minute or two to wash those few pots and so whilst I'm here .. Oh, and if I just get those few clothes out of the wash basket and put them in the washer .. Ah, and I'll put those clothes just finished in the wash out on the line" ... and before we know it those " .. minute or two .. " have added up to 30 minutes all the while me saying " ... Will you sit down and let me do it .. "

By a miracle (don't ask for the details!) - we had our first child 15 months back - but seriously, 4 weeks before she gave birth she went upstairs to bed on a day she was in absolute agony with her back and from downstairs, I suddenly heard a banging .."huh?" .. I went upstairs to the bedroom and found her stood on the bed, 8 months pregnant and with a knackered back, jumping up and down trying to push the duvet into the duvet cover .. Naturally, I went nuclear on her ..

.. but she just doesn't listen. Every time I say something, she goes into a strop for a hour or so but, to her credit, thinks about what she's been doing and realises it and tells me I'm right and she should take it easy ... until the next time.

Ok, I get she's frustrated with her condition. For half of her life she'd been independent and a "go on out there" type of girl .. She'd work every hour of the day .. out with friends .. partying .. and then .. bang .. and has spent the last 15 years in agony, consigned to a wheelchair at times and to taking it easy, not able to work for the last 8 year, being prodded and poked by various doctors to the point where she's just sick of it.

In truth, she's never adapted to it. She is constantly trying to do the things she used to do, but now can't, instead of finding out the things she can do - and no matter what I say to her, she just carries on regardless and inflicts upon herself the pain and misery that comes with it.
Have either of you had any counselling? I found it really helpful.
I may be well out of line here - please don't think I'm judging or being offensive, but is there any way this may be attention seeking behaviour? I say this as I witnessed a very similar situation with some friends a few years back. The wife suffered awful back pain, and had surgery and goodness knows what else, but she always insisted that she "may as well do this while I'm up" over & over. After some counselling sessions - both together and individually, she began to realise that she was putting on this martyr act partly to draw attention to her pain as she wanted everyone to feel sorry for her, and partly to make herself worse so that the husband felt bad about how much pain she was in.

I can't remember how it was termed in psycho-speak, but it was something about wanting to be a victim, rather than a fighter or a survivor. The counselling helped her to to have quite a significant attitude turnaround.

As I say, I could be way off the mark here, but whatever, I have seen some great outcomes with counselling as Bowlingbun has said.
Hi, does your wife belong to any forums herself?

What is her back pain caused by?

I have osteoarthritis and I belonged to Arthritis care forum, this really helped me deal with the crippling pain I was in (whilst waiting for my second hip replacement,) and the affect it had on my life; because unless you are the one dealing with chronic pain, you can not truly understand.

Also google and print off The Spoon Theory.

Melly1