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'Life has changed indeed. It has become very demanding.'
'I've personally been quite depressed at times thinking about her future and also about work I could do to supplement our income and also accommodate her illness.'
All the members of the families are affected by the child's illness, but data suggests the mothers still bear the brunt of the daily additional work, changed circumstances and accessing, then co-ordinating diverse services to meet their family's needs. Mothers in particular experience the cutting change of becoming a parent carer. One mother described this well. She said 'you start thinking you're going to have to refocus your whole life really, and your role as a parent becoming a carer.' Another said, 'It's hard work caring for an older child, like a baby - carrying her, pushing her [in a wheelchair], dressing and tending.'
Most fathers acknowledged the greater challenge borne by mothers. One father said 'I think it's tougher for women. They don't get a break. I can go to work and when I get home it's bedtime. She'll say it's been a really tough day and we'll talk about it a bit but I haven't had it in my face like her have I? She's had the tears, the doctors, appointments, medicines and stuff. So I think it hits them harder.'
Mothers predominantly tried to diligently monitor the child's condition, and took responsibility for delivery of the complex rota of medicines, exercises and splints. It is still usually the mother who accompanies the child to see different professionals, and she who communicates with education, community and benefit agency staff. Many children had disturbed nights either due to joint pain, fevers or splints and sometimes children needed extra pain relief four-hourly throughout the night. Both parents, but more often the mothers, needed to meet the child's needs at night and may endure broken sleep for years after their peers who parent healthy children.
Some mothers reported that the consequence of their carer experience resulted in them becoming more tense, more serious and absorbed trying to meet the needs of the family. Fun was mentioned by mothers only in terms of them trying to deliberately create it for their children, but not for themselves. This may be a tendency of all parents yet the amount of time and emotional energy absorbed by carer tasks may considerable reduce opportunities for leisure.
Mothers said they still felt 'on duty' when children were at school; one said: 'Even when she's at school I can't relax or go too far from home as it is always a worry in case the school phones to say she needs to go home.' One mother explained 'I just can't be the same person I was. I don't know if it is me or the constant worry about what she's like but I can't remember things like I could before. I'm tired, I can't concentrate and I've made mistakes [at work] that I never would have before.'
Mothers spent the greatest proportion of the child's day and sometimes night too, with their children. A close bond of understanding would reasonably be expected to evolve between the two and this was confirmed during the study.
Mothers described a concern about being perceived as over-protective of their children, especially when they queried or had to intervene about a professional's manner of contact with their child. For example, one child developed such a dislike for painful physical examinations that she would scream whenever someone with a white coat approached. The mother had to remain by her bedside and repeatedly explain the situation, and insist that examinations were limited to essential assessments only. Another mother described how, while in hospital, busy nursing staff did not give her child pain relief as often as directed, despite the mother's reminders, and staff even missed out administering pain relief to some children who were not accompanied by parents. These and similar incidents reported were not uncommon, and prompted greater maternal vigilance, but mothers perceived they were judged as being overprotective.
Mothers and fathers commonly reported emotions associated with loss and grieving. When nine families were interviewed in depth, four mothers and three fathers expressed feelings of recurrent or cyclical grief known as chronic sorrow. The intensity of parents' feelings may be because children with arthritis usually live with global pain, and that the symptoms were so unpredictable that parents lived with uncertainty.
The following quotes from different parents to communicate their often hidden sense of loss: 'It's losing everything - the child you expected to have, laughing and playing, with no problems. Your hopes and dreams are smashed. It's a struggle now, it's always there. You can push it back sometimes when things are better, but it's always there. A sadness, a black hole. I did get depressed at first. It was despair on her behalf. It is still upsetting, just thinking about her.' 'For me, it was total disbelief to start with , that this had happened to us and to her, that arthritis could have such an effect on a child's body. And very angry at times about the whole thing and I can remember for weeks afterwards just being in the kitchen crying and crying and crying about it all. And just feeling so angry and helpless not to come to terms with it.' 'I think the grieving is ongoing but not as intense as it was to start with. When something new happens, something's gone wrong then, yes, it comes back again. You know there's something wrong with her hips and you think 'Oh no, not again' .
While trying to look after everybody else, mothers in particular need to look after themselves too. In a few families, the fathers take the primary care role and these tips could apply to both parents.
"People think you're coping, and you're not. People think because you're not falling apart all the time and going round in shrouds of grey, they think everything's fine and hunky-dory."
You may be a lone parent by choice, or have a partner who is unwell or absent for most of the time perhaps due to job commitments like for example, long-distance lorry drivers, oil rig workers, and service personnel. The combined emotional and practical effort involved in caring for a child with arthritis is considerable even when two parents are available. Coping as a lone parent is hugely more stressful and can increase feelings of isolation and pressure. Try to find a parents group, a key friend or professional who understands either lone parenting or caring for a chronically sick child.
Different people have different appetites and needs. People also react differently to long-term stress. Most couples experience changes in how they communicate with one another, and how they express or meet each other's needs. Also sudden developments and crises with the child with arthritis can dramatically influence people's hormones. An anecdotal example would be when a child is suddenly hospitalised, it is not uncommon for the mother to miss her period or after the child is out of danger, have a heavy delayed bleed. Conversely, parents may need extra reassurance and loving support during difficult times; but what if you both parties need the extra support?
Both parents are likely to be anxious and very tired, so it is not surprising that many couples struggle with issues about stress, sex and sleep! This is entirely to be expected and 'normal'. Few people seek help, although the majority may feel desperately upset about these issues at different times. There is good counselling support available through different organisations (like Relate) and it is always wise to seek help before the situation has reached crisis point, when the solutions are likely to be more simple and achievable.