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Rheumatoid Arthritis

Parenting & childcare with rheumatoid arthritis

Childcare can be more difficult and mothers, fathers and children may need to adapt. This largely depends on the age of the children and the symptoms of the parent. Several people thought their RA had only minimally affected their older children or not at all.

Picking up a baby or toddler can be difficult and one woman described her young baby as a 'monkey' as she clung on to her. Another mother described how her children adapted, including how her daughter used a stool to get in the bath with minimal help. One woman had difficulties picking up her child to breastfeed, especially at night, so her husband brought her the baby.

 

Her children adapted practically to her difficulties and she feels that has made them generally...

Her children adapted practically to her difficulties and she feels that has made them generally...

Age at interview: 51
Sex: Female
Age at diagnosis: 27
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Yes. Quite reasonably really they weren't difficult children they seemed to adapt very quickly to the fact that I, I was limited in some of the things that I could do. I think children, I think children do, I think they're very accepting and nothing seemed to be a great problem when. It was a little difficult to lift my daughter into the bath when she got slightly older, not big enough to manage completely by herself but not a baby anymore. 

But we got a stool and she managed to sort of climb up and I helped her but I didn't have to take her full weight and, they, they, they did nice things, really. They knew I couldn't pick them up off the floor to give them a cuddle, so they would clamber onto the, we had a trestle table in the kitchen, benches, and they would get on the bench and get on the table, so they could then stand and I could give them a bit of a hug without actually having to pick them up and. 

They were very good really my life was very happy then you know, I had quite a lot of pain but it didn't really seem that important because you know, I had my family and it was lovely bringing up the children and we had a fairly, you know reasonable life. 

Yeah they, and they have grown up fairly thoughtful and helpful, I think. I don't know whether they would of done anyway or whether it was just more was required of them. As they grew older, they had to do quite a lot. But then having said that, not really, not more really than you expect normal children to do if you expect them to help out and be responsible and generally, you know, not just think of themselves, that you know it all seemed to work, work quite well. 

One woman used an adjustable bath seat to bath her baby, and a 'Hippy Chick Hip seat' and back pack made carrying her toddler much easier. Pushing a pushchair one-handed whilst holding onto a toddler was difficult and so one woman put the toddler on reins to overcome this. Kneeling on the floor is often difficult or impossible which made it hard to play with toddlers. Nappy changing was easier on a table than on the floor, although it involved picking the child up. Rescuing toddlers who have fallen can also be difficult, but one woman felt this had made her child more resilient - she got up and rubbed her own knees better.

 

Equipment she has found useful includes an adjustable bath seat and hip seat.

Equipment she has found useful includes an adjustable bath seat and hip seat.

Age at interview: 27
Sex: Female
Age at diagnosis: 27
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Oh the other thing we found useful is with my problem with my wrist I can't, the way you're shown how to bath a new baby is to put your arm round and hold' I can't remember 'cos my little girl's nearly two now, whether it's your, you're hand, their hand, their arm or their leg the opposite side from you and I can't do that. I can do it but I don't feel safe doing it. And I found, I think a friend was using it, an adjustable reclined seat that suckered onto the bottom of the bath. I think there were several that you could get but the one we got was adjustable so as she grew, it could be adjusted so she was reclined. She loved it 'cos she didn't have to be held.   

I didn't actually give her that many baths but that's just because my husband loved, you know, Dad's got to be involved somewhere along the line. But she loved it 'cos she could kick, Dad used it all the time and I felt safe 'cos I could give her a bath because she couldn't go anywhere because it adjusted as she grew. It was fine and that I think we used from, from when we got home from the hospital, so she was, she was a few days old then, until she was nine or ten months. And it was only 'cos she sat reasonably early, so she was she was confident sitting on the bath so, yes that worked really well.

Yeah one thing I have, have found useful is we bought this thing called a hip seat I mean it's not a sort of a product necessarily for someone with arthritis but it it's kind of like a bum bag that goes on your hip, that your child can sit on and then you just put one arm round them, so your back's straight. So it's a way of carrying them when their legs get tired, without hurting yourself and I've, I found that really useful. I mean whether it's whether I find it really useful 'cos I've got arthritis I don't know. I know a few people that have got them 'cos they're not, they're not kind of the world's cheapest piece of equipment, I think they're about '40 or something but we've find very useful. 

 

She has had to change how she holds and picks up babies and children.

She has had to change how she holds and picks up babies and children.

Age at interview: 47
Sex: Female
Age at diagnosis: 45
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Well I've tried not to let it affect me at all because when I first had it, oh yes, oh jumping back now, when I, before I went to the doctor's I thought why I was getting a pain in my arm was because I was pushing a pushchair uphill one-handed, you know, and holding a child with the other hand and I thought, 'Oh,' and I used to keep thinking, 'I'm getting too old for this, you know. I'm getting too old to be a child minder.' And, so there's things that I now don't do, is that the question? 

How did it affect me? [Hmm] There's things I won't do. Like when I'm pushing a pushchair and I've got a toddler I always put the reins round my wrist and I don't hold their hands, I need both hands to push the pushchair. And I've got to make them hold it. And then you don't want them to hold the pushchair when they get too big 'cos they drag on it, and you're pushing harder.

So, I've lost my thread. So I try not to let it affect me but it does affect my work as, you know, I don't get down on the floor and play with them very often 'cos my knees are stiff. And I change babies' nappies on the table whereas before I'd do it on the floor. But then that has its drawbacks because my wrist is the worst thing and of course then you've got to pick them up to put them on the table. So I usually, with the bad wrist, sort of hook them up under the legs, so I'm not using, using my wrists I'm using the, my el, forearm.

And if you go out and there's no seat at the park, I don't like to sit on the grass because it's hard to get up. So I stand there thinking, 'I wish there was a seat so I could sit down.' So but in general I just try to carry on as normal.

Getting babies and children into car seats (and shopping trolleys) was a problem if the clips and fixings required pushing hard. These difficulties led one woman to stay at home.

 

Taking her young baby out in the car and shopping was frighteningly difficult, so she stayed in...

Taking her young baby out in the car and shopping was frighteningly difficult, so she stayed in...

Age at interview: 37
Sex: Female
Age at diagnosis: 27
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Yeah, it affected me quite a bit, I found I couldn't actually, when [son] was born, I couldn't actually go out of the house at one point, because I came across every obstacle possible, I think. I couldn't hold him in one arm to shut the front door so I'd have to carry him to the car with the doors open.

Can't undo, you have to go and unlock the car before you go out of the house because you, you got to do so many journeys to do one simple thing which is walk from your house to your car. But you can't, you have to unlock and open a door in your car, open your, you know, have your front door open, carry your baby out, and then do it all to come back in again. 

And I, it just frightened me so much. And then you come across seat clips, baby's seat clips, I couldn't push the buttons because it was push into a hole and I couldn't, I didn't have the strength to push it in to let him out. I was actually sat in my car outside for half an hour one day because I'd put him in the seat and then couldn't get him out. Luckily I had a mobile phone and phoned a friend and she came and got him out of the car. But things like that just frightened me and I stayed in for a long time. 

Even the Sainsbury's trolleys, the clips, you can't un, undo them, you can't un you can't push, you haven't got enough push in your fingers to undo the clips to get the children out once they are in there. And I stayed in for a long time and then one of my friends said 'This, you've got to stop, you've got to go out'. So I was taken out but they would watch me do the things not do them for me. 

They would, and then if I got stuck I always had somebody with me and that's how I learnt to go back out again and  eventually started to shop again on my own. And the local stores have got lovely people who now recognise me and as soon as they see me they come and pack for me and they put it in my car and I tend to do shopping when I know someone's home to help me lift it in. And I sort of work round other people now  so I'm not completely on my own.

 

It was difficult for her especially in the mornings, so her young children had to learn to do...

It was difficult for her especially in the mornings, so her young children had to learn to do...

Age at interview: 37
Sex: Female
Age at diagnosis: 27
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Not really, I was fortunately where I lived at the time was literally I was in a flat and I had to just go down the stairs and the school gate was virtually on my doorstep. So that was good as they grew I could, I didn't have to walk to school, I didn't have a long journey to get them to school. I had good friends, again, that the days that I couldn't down the stairs they would take them to school for me. 

They had to learn to dress themselves and bath themselves and things like that really early. When my mum was there obviously they played for nanny, and nanny would dress them and bath them and things, but they did have to do a lot very early on for themselves. I did try to do as much as I could with them, but it was, it's very hard. It's very hard, I mean, some mornings I would have to virtually fall out of bed onto my hands and knees, crawl to a door, and pull myself up on a door frame to actually get to standing. 

And then to have to try and dress children with hands that I couldn't do buttons, I couldn't do zips, I couldn't do coats up. All sorts of things like that I found extremely hard. Didn't know of any of these gadgets that you can buy now that you know, you can button things, and zip hooks, and things like that. You try to make things yourself with a bit of wool and pull zips up, and you know, little things like that you had to try and make for yourself. So now I know there's you can go out and buy things like that. [laughs] I wish I could have it over it again.

Early morning stiffness can be a problem when young children wake early and need care. People talked about how their children of all ages needed to be more independent, learn practical skills and be more self-sufficient. One woman had two young children when first diagnosed and felt they had to grow up faster. These additional responsibilities were also seen as a benefit. Older children, who had grown up with a parent with RA, were regarded as more understanding, thoughtful, caring and compassionate people who accepted that not everyone was as able as themselves.

Keeping medicines out of reach of children is very important. One woman contacted NHS Direct when her 2 year old picked up and spilt her pill box onto the floor and she was worried one of the tablets was missing.

Younger children still expected a normal life and did not understand the parent's problems. One mother said the children did not like having their father do things for them that she normally did, causing friction which she found stressful. One father said his children had difficulty understanding why he needed more rest and could not play with them; he found he got irritable quickly. The local GP surgery ran helpful sessions for children to discuss issues they had when a parent had an illness (see 'Impact of diagnosis on family and others').

One partner described how he had adapted and taken on more of the childcare to relieve his wife when he was not at work.

 

Helps his partner with child care as much as he can when he's not at work.

Helps his partner with child care as much as he can when he's not at work.

Age at interview: 30
Sex: Male
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And it's been juggling that work/life balance and needing to be around at home for [wife's name] with our daughter when things weren't particularly good, you know, because she was finding it very difficult and finding it very tiring to look after her during the day. But we've, we developed a system and most people do, you know of how, how we do things.

So for instance I'd sort of come home, and I mean I used to joke about because my wife was a nanny before, before she got pregnant and she, we used to joke about having the hand-over period. I'd come home from work and she'd hand me my daughter and say, 'right, she's done this, this and this' and go off and lie down and rest. You know it was a bit like a nanny signing off from work so it was quite amusing. 

But that was the way we developed, that was the system we developed to help. She'd cope with our daughter during the day and looked after her during the day when I was at work and then I'd come home and I would take over for the evening, sort of bath, bed, story routine before getting her to bed. And I used to do the early morning, get up, give her first bottle and get her up and about before going off to work. And that's really how we coped

First thing in the morning, getting her up and then the evenings with the bath and bed routine and it's fantastic. It gives me good time with my daughter which has been great and that's really what's got me through, you know because it has been hard, obviously, working an 8/10 hour day sometimes you know. It's been quite difficult to juggle work and home life and that's been probably the biggest strain on me.

Was trying to get that balance  with a job that demands as much time as I can give it and I could be working 10/12 hour days without batting an eyelid and there are people in my office that do that. I wonder whether they ever see their family but for me family is a lot more important than my job so  my family always came first. That's always been important for me and will always remain that way. 

So yes, I have good days and I have bad days, you know sometimes I come home from work and I'm absolutely shattered, I've had a long day, I've been in meetings and then I've got to take over looking after [daughter] and she's in a miserable mood because she's teething and it can be, it can be very difficult. And those are the really low points but other days, if I've had a tough day at work and I come home and [daughter]'s in a great mood and it just cheers me up, you know. I come home and she just makes me laugh and that's a great end to the day and that's, that's really the bonus for me.

Yes, and helping my wife out as well so that she can have a more relaxing time at the weekends. So I tend to do a lot more of the child care at weekends, which is fine. I enjoy it most of the time but sometimes there are times when you just want to go off and do your own things. All the guys are off out in the evenings and stuff like that and I haven't been able to join in and, particularly I found that quite difficult. 

Children were often supportive and helped overcome some of their parents' worries. However one woman was upset because her daughter was bullied at school 'because her mother was disabled' and could not take her swimming, etc. Another woman who has had health problems since before her son was born thinks herself lucky because her teenage son is caring and is not embarrassed of her in front of others. She tries and makes sure that he does not loose out on teen activities like sport and meeting friends. 

 

She felt she had let her children down by having arthritis, but they helped her regain confidence...

She felt she had let her children down by having arthritis, but they helped her regain confidence...

Age at interview: 78
Sex: Female
Age at diagnosis: 32
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Yes. It affected me  when the children were still at school, I didn't want to go to any of their sports days or open days, or anything connected with that, because I felt I'd let them down. It took many a year, for me to understand that I hadn't let them down. I was still their mum, if only my face was left, I was still their mum.

And they treated me just so, so sort of normally, you know, when you've got a daughter and she gets to 16, 17 and she's interested in this and interested in that, I felt I couldn't do that with [daughter] because I wasn't the same mother as I had been when she was thirteen. And [huh] you get a sense of, you go through it, it's a stage of,  you, you've no confidence, you've no self esteem and you don't know what to do to get back into normal again because the pain of arthritis dictates everyday what you can do and what you can't do. 

And it's no good making up your mind 'Well I'll go shopping today or I'll go shopping tomorrow' because you don't know what you're gonna be like. And I used to feel, not ashamed, but this great sense of having let them down. So I wouldn't go to their school sports, I wouldn't go to the open days. And gradually they sensed how I was feeling and they used to say, 'Even if we have to hire a horse and hitch him to the wheelchair, you're going'. They overrode all that sort of nonsense, 'cos that's all it was, was nonsense. But when you lose your, your self respect and that, you do have a lot of nonsense in your head.

So they helped you sort of to build it again.

Absolutely, absolutely. Hmm

 

Her son does not mind going into town with her when she is using her scooter. She says that she ...

Her son does not mind going into town with her when she is using her scooter. She says that she ...

Age at interview: 40
Sex: Female
Age at diagnosis: 38
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Can you tell me a little bit about your relationship with your son in term of how you have managed that, because you were, you started having problems when he was about six years old?

Yeah. Well, I've been having, I've been taking pills for quite a long time, since just before he was born, actually. So he's, sort of, grown up with his mum taking a lot of pills, and pills being in the house but not, obviously, within his reach but, you get your funny thing that happen with them, when he was at infants school, they had a special man that came round and they tell them about drugs and things and they say to them, 'Does anybody know anybody that takes drugs?' 

So, up his hand went, 'My mum takes drugs.' No [laughs]. So when I went in there that evening, after school, to the show, the parents were shown, they were talking about this little boy who shot his hand up and said, 'Yes, my mum's on drugs.' And I knew, I knew it was him, I knew it was straight away. I said, 'Yes, that was my son, wasn't it?' And I said his name and they said, 'Yes.' I said, 'It's because I'm ill,' [laughs]. 'I don't take recreational drugs,' [laughs]. But he was so proud of it that he wanted to tell all about it [laugh].

He's a very placid child. He's very caring. I'm very lucky because I know a lot of teenagers aren't like that, I mean, even though he is a teenager now, he is, he has his moments, like most of them, but, on the whole, he's very caring and he does help his dad out, does help me out. 

A friend of his said, a couple of months back, to him, 'Oh, you're always doing things for your mum and dad.' And he said, 'Well, it's, I, it's not because I don't want to.' He said, 'My mum's ill.' He said. 'You know my mum's, she's ill.' 'Yeah, but you shouldn't be doing this.' He said, 'If I didn't want to do it, I wouldn't do it.' He said, 'I love my mum and I'll do for her what I want to do for her.' 

And I am a very lucky woman. It could have been total opposite.  He doesn't go without though, like I said before [laughs]. I have played football with my scooter before in the park, hysterically funny. I've run over him with my scooter, because he stopped dead in front of me and I ran over his foot, one day [laughs]. 

And he's not embarrassed, this is what got me, actually, he's not embarrassed to be seen with me and my scooter, or with my walking stick down the town, he'll be there by my side, he won't, sort of, wander off and say, 'Don't want, don't want my friends or anybody to know.' But all of his friends know he's brilliant. He's a rock, he really is.

I don't know where I'd be without him.

Well, he's fourteen, he'll be fourteen at the end of the month, so.

Okay.

He's at the age where he's, sort of, getting an attitude as well, but not much, actually, we, I mean to us it's a lot, but compared to a lot of other children, it's not [laughs]. He goes, he has tennis coaching every Tuesday night, and he still goes out and does things with his friends as well. In summer he's always off out, go, playing tennis in the outdoor tennis courts, he plays rugby, football, everything. So he doesn't miss out on going places with his friends because of it, and that's only because I've made sure he doesn't. Otherwise, I mean, there have been times where I've, we've had to say to him, 'You are going out. You are going to go out with your friends.' Because he's spent too much time indoors, at home, worrying. He's had to put up with a lot from a very young age, I suppose, so it comes, it's all,

Several people regretted they could not be very active with their children, e.g. playing football, walking, swimming, outdoor pursuits and trips out. A father said he did as much as he could when he felt well, and a mother still went cycling with her daughter.

Hospital stays for rehabilitation and operations involved separation and were often difficult for both children and parents. One woman felt her 21 year old daughter had been affected emotionally by this all her life and always had to be reassured that going into hospital did not mean 'Mum was going to die'. She had first gone into hospital when her daughter was 9 months old and several times since. Hospital outpatient visits also need planning if children need a babysitter.

Several people had support with childcare from their own parents and friends (see 'Sources of support'). A few people we talked to were worried about their children developing RA in later life; often growing pains in children exacerbated this worry. Two children had tests to check for RA but these were negative (see 'Ideas about causes').

Last reviewed August 2016.

Last updated September 2010.

 

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