Basic Stuff

Before a hospital visit
For Mums
For Dads
For Lone Parents
For Grandparents
Tips to help parents support and include siblings
Supporting the ill children
Checklist of positive ways to help your child

•Healthcare professionals can make a huge difference to daily life and it is really worth being persistent in getting your questions answered.
•Always write down the name of any professional you visit or telephone. Be clear about which department they work for. This information is important because: staff change and you may need to arrange follow-up action, therapy or help.
•Write down your questions before you leave home.
•Take someone with you to appointments – it’s very difficult minding your child, remembering your questions and listening to the answers all at the same time.
•Don’t be afraid to ask questions – and ask again if you are still unclear.
•Ask each consultant or therapist to send you a copy of their report or clinic letter. They have to send a copy to your G.P. after each of your child’s appointments. Keeping each copy of these letters will prove very helpful when you discuss your child’s condition or needs with other professionals. (For example, it provides evidence that your child has recognised problems when dealing with schools or work.)
•If you have particular preferences or fears about specific treatments or drugs, you must say so. The professional cannot guess what is worrying you, and will usually negotiate treatment options where possible.

…and finally

•Make sure you have dinner planned before you leave home because most parents find attending   appointments absolutely exhausting!

Checklist for the whole family

•Try to do things as a family – it’s easy to concentrate too much on your ill child and get the balance wrong.
•In the early days or during a crisis, appoint someone outside the home to be the contact person for giving others news; it can be extra tiring, and depressing to go over the same news time after time yourself.
•Don’t be afraid to take the phone off the hook, so that you can enjoy some well-earned peace and quiet.
•Discuss what happened at appointments or when in hospital with the whole family, and ask how every one feels about these things. Sometimes people don’t express feelings because they try to protect each other, and everyone ends up thinking they’re alone. By discussing things each time, you will find that you can then understand how each member of the family is feeling, and you can support each other.

For Mums
Mothers’ experiences

‘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.’

Mothers explain what it feels like

All the members of the families are affected by the child’s illness, but data suggests that 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. 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 nausea 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 considerably 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’ relationships with children with cancer or leukaemia

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.

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.

Checklist for Mothers, by Mothers

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.”

•Don’t be afraid to say ‘I can’t do this any more’ and ask for help when you need it.
•Find someone who’ll listen and take you seriously, not necessarily a qualified person, just someone you get on with and trust.
•Be ‘selfish’ – if you go under everyone will suffer. Put yourself first for once.
•Be prepared to deal with well-meaning but insensitive comments sometimes, even from family members and close friends. In time, you’ll find you get better at hearing what people mean to say.
•Try to develop or keep an interest outside the family (like work/sport/hobby) having somewhere to go to where you’re treated as ‘you’, which helps to put things in perspective.

Another mother made sure she made time to play sport and said “that’s my stress relief – I think it’s essential, and nobody asks you how your child is – I’m a person. It keeps your mind and body together.”

For Dads
Fathers experiences

In 1991, Straudacher wrote ‘What does a grieving man do? He does what he needs to do to take care of himself. It may mean that he’ll carry grief as a solitary burden in his head and heart for years. It doesn’t have to be that way.’

The impact on fathers of children with cancer or leukaemia

The impact upon fathers seemed less consistent than that reported on mothers. Some fathers said their daily routine was significantly changed by their child’s illness, while one father said ‘life had changed drastically. In the early months of struggling with the diagnosis, parents reported that fathers had more difficulty accepting the child’s illness. For example, one father said ‘It was like a bad dream. We were looking from the outside inwards at somebody else but it wasn’t really us. We couldn’t accept or believe it. And there was a lot of fear, and concern, and stress because we didn’t really know very much about the disease.’ Other fathers talked about that initial shock, their sadness and the stress of their lives now. They all expressed their belief that it was more difficult for their wives.

A typical comment was ‘He was really shocked at first. He tried to support me when they didn’t believe us. He came with me to hospital – but he’s got to work. You can’t expect his boss to keep on giving him time off so he has to concentrate on his job. So I’ve done the hospital and the appointments and chemo and stuff.’

Other fathers explained that they often left the house before their children were up and returned home at bedtime, hence missing much of the child’s day. The fathers were most often the financial providers for the family, especially where the mother’s carer responsibilities limited her availability for paid work. In these U.K. households, the mothers felt their husbands were broadly supportive but these mothers said they coped with the impact of the disease and treatment virtually alone. Fathers reported that their work pattern was disrupted because they helped to meet the needs of siblings, such as collecting them from school, occupying them during weekends and supervising them while the other child was in hospital.

Fathers said that they felt more socially isolated from their former friends and some family members who did not understand what it was like living with a child who was ill. They also had to change their routines and spent less leisure time with other men (at the pub, football club or sports activity). They also felt like the forgotten parent and were not as informed or recognised by professionals.

Checklist for stress, sex and sleep!

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 ill child 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 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 whilst the solutions are likely to be more simple and achievable.

Checklist for fathers, from fathers

These final comments may help, although there are no easy solutions nor solutions that suit everyone.

•It does help to honestly share your feelings and needs with each other.
•Put into words what you mean to each other; this is a valuable and significant approach with long lasting benefits.
•It is essential to deliberately create and protect regular quality time with each other.
•It is constructive if both parties try to meet each other’s needs, rather than focussing on your own needs or disappointments.
•Look at the bigger picture; the physical toll of caring for a chronically ill child is tremendous, and there will be times when you will feel totally drained. This is not failure, only a predictable outcome. At these times, you need rest and space, and undemanding loving support.

Personal experience and research evidence highlights the need for us all (mothers, fathers and professionals) to help parents discuss their thoughts and feelings, and to meaningfully support them so that they can continue to care for their family.

For Lone Parents
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 your child 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.

For Grandparents
Ideas for grandparents by grandparents

•When offering help, don’t wait to be asked, but be sensitive. Please be honest about things you would feel unable to do.
•Listen! Be a sponge!
•Just be there.
•Give them money now to help them buy the help, equipment or meal out that they need: don’t wait to leave it to them in your will.
•Be led by parents – they will tell you what they need.
•Keep offering help – things change and they may need help suddenly and feel unable to ask you. Tell them that you will try to help in any way.
•You can’t give advice unless asked to.
•Try to understand the impact of the illness.
•Learn to be thick skinned – sometimes parents need to let off steam and you are a safe person to do it to.
•Information is very important to find and share – especially if it comes from specialist organisations or services.
•Brothers and sisters need your extra love, care and attention from you.
•Don’t dump your upset about the child’s illness on the parents. They are already coping with the child’s distress, and their own feelings.
•Get involved in a local support group so that you have a group to talk things over with.
•Help these groups fundraise so that services can improve for families.
•Generally, extra sweets and presents just for the ill child cause problems for the other children – ask the parents for ideas of suitable gifts for each child.

Tips to help parents support and include siblings
•Include brothers and sisters in a few hospital appointments; they will see how boring the appointments and waiting is, and how uncomfortable the journey and examinations are. They will begin to recognise that the ill child faces many   unpleasant challenges, and that their time away from school with the parent are not treats to arouse any jealousy.
•Keep on explaining to children what is happening – what the new medicines, or special equipment are for. Remember to   keep on explaining things to them, their level of understanding grows as they mature and so your explanations can deepen too. Some parents do explain things fully in the beginning, but forget to keep on explaining things.
•Create situations when they feel they can ask you any question. If you do not know an answer, you can say that you will ask some one else to get an answer. Remember to get back to them with the answer.
•Remember brothers and sisters need you too. They may be worried they have or may get the same problem but not know how to tell you.
•When time to take medicine, some parents have found it helps if well children feel included if they take a vitamin tablet at the same time (to keep the child well, and keeping to the manufacturers’ instructions). This shows the siblings that they are treated fairly, that medicine does not taste nice, and that medicines are not treats for the sick child.
•Have family discussions and give time to listen to each of the child’s feelings, thoughts and expectations. Research shows   that this open, honest communication considerably helps families grow together and cope with long-term illnesses.

Supporting the ill children
There are no easy solutions to real challenges they face but these things can help:-

•Reassure your children that you love them, that you are on their side and you will tackle the problems together.
•Help your child develop confidence, always encourage her efforts.
•Say how proud you are of them.
•Encourage their self-esteem, involve them in things they enjoy and can do.
•Its normal for them to be upset and afraid. Be there to listen and respond to their fears and concerns. Keep life as normal as possible.
•Avoid situations that will highlight what they have difficulty doing, for example on sports day suggest they hold the tape, or keep the record of winners rather than race with their peers.
•Talk about positive ways of being friendly to other children.
•Talk to school staff or friends’ parents as soon as problems arise –both for advice and practical assistance to stop problem behaviours.
•Keep calm.
•Talk about the situation with the whole family, face the problem together.
•Siblings can offer valuable insights, advice and solutions.

Checklist of positive ways to help your child
Here is a checklist of ways you can help you child grow in understanding about herself, her illness, and her potential. Your response will depend upon the age of the child.

•You can discuss with the child how she is feeling, both physically and emotionally about what she thinks about different things (like not being able to do things). This helps her learn to identify her feelings, and supports open family communication.
•You can discuss with her what treatments she has been prescribed and why, or any options you may have. This helps   children understand what is happening, and gives them an idea that they have the power to make some choices.
•You can encourage your child to express what she feels about situations, treatments or other decisions. This helps her   practise communicating with adults and helps her know her opinion matters to you.
•You can involve the child in those decisions, and help the child know that their perspective is taken into account. It helps   build their self-esteem, and sense of control rather than helplessness or dependence.