As an organisation whose members have the practical experience of living with diabetes, one thing that we are all very aware of is that diabetes affects everyone in the family. This is probably especially so when it is your child who has diabetes and being aware of this may help to prevent some of the pitfalls which make life more difficult. Everyone in the family has their own way of coping with diagnosis and the subsequent changes in the life of the family. We all react differently, so it is impossible to cover all the various dynamics in all families. Here are just a few examples that may help you to realise that your family is not alone with your experiences and concerns.
Mums and Dads
However strong a marriage or relationship is, it is important to recognise that diabetes, like any other chronic condition, can put a strain on that relationship and diabetes in the child that you both care about so much, is no exception. However, it can, and often does, bring couples closer together at time of diagnosis:
Quote from a friend of a family where one of the children had been diagnosed 12 months earlier. "You seemed a very close family. It was as if you had all closed ranks and didn’t want to let anyone else in."
But is that the case when living with diabetes 24 hours a day, 365 days a year every year? Sometimes the day to day stress can affect the parent’s relationship with each other and cause conflicts.
It is best if the responsibility for your child’s diabetes can be shared but very often, because of circumstances, one parent takes most of the responsibility. This is usually for very practical reasons – work. So, by force of circumstances, it is the often Mum who shoulders most of the responsibility, although the following can apply just as much to Dads who shoulder most of the responsibility. Here are just some of the possible effects, citing Mum as been the main ‘carer’:
- Dad feels excluded and Mum feels he doesn’t do enough or is not interested. Resentment builds up.
- Mum feels that their child’s diabetes has become her sole responsibility and then resents Dad having an opinion on decisions about control or approaches to diabetes within the family.
- The worry and energy spent on ‘getting everything right’ makes Mum tired and irritable and arguments easily develop.
Visiting the diabetic clinic
This should be seen as helpful but it often feels like the third degree and a test of the competence of the parents. You have been set blood glucose targets for your child and these may well have not have been achieved. [I say this as an old hand at parenthood because I concluded that all too often the targets are unachievable if you want any sort of life that is not totally ruled by diabetes!] However, the fact that you are questioned about these and why the results are not what the health professionals at the clinic would like to see, makes you feel guilty, ashamed, a failure. Worst of all, you feel you are letting your child down and at risk of affecting their future health. You may also feel angry with the health professionals for making you feel this way when you have being trying really hard ‘to get it all right’. The parent who does not attend the clinic does not have to go through all this and they probably cannot understand the effects it can have. It is easy for resentment to grow against the parent who escapes this ritual.
Fear of hypoglycaemia
This is very common and understandably so. It is a time when we have to make decisions and take action and we feel a great weight of responsibility for the outcome. Severe hypos at night are frightening, especially if accompanied by seizures and, whether the fear is rational or not, we sometimes fear that our child will die. All of this can result in:
- Conflicts from one parent wanting to raise blood sugar levels to avoid future night hypos and the other parent not agreeing because of their fears of the long-term complications.
- Both parents not sleeping well and being tired etc. The parent who has to go to work the next day assuming that their sleep should be less disturbed and the other seeing this as a ‘cop out’!
- Because of fears of night hypos, one parent sleeping in the child’s bedroom – not good for the relationship between the parents.
Quote from a Mum: "It seemed at one point every time we had sex Gabby knew and walked into our bedroom in a hypo. I found it difficult to have sex and my husband could not understand why – he thought I was being irrational and that I no longer cared for him."
Not feeling able to go out for an evening together because of the fear that the babysitter will not be able to handle a hypo, gives parents no break and freedom, not even for a few hours. If both parents are not happy with this, it can lead to fewer activities as a couple and doing more things separately. Even worse, it can mean that one partner is always the one to go out.
Quote from one Mum: "We didn’t used to argue very much and then only about one thing – money! Now we argue a lot more and about only two things – diabetes and money!"
Siblings and their rivalry
It is unavoidable that sometimes your child with diabetes comes first:
- At diagnosis everything centres on the child with diabetes.
- Hypos have to be dealt with immediately, even if you are helping his brother or sister with their homework.
- Mealtimes often are influenced by diabetes and so is the food the family eats.
- Clinic visits have to fit into the family routine.
- At times of illness or emergency, the needs of your child with diabetes do come first.
- Depending on their ages, it is easy to ask the brother or sister to ‘keep an eye out’ without realising that this is a responsibility that they don’t need or want. If the children go to the same school, it is not uncommon for the teachers to ask the brother or sister to help with a hypo.
The list is almost endless and it is obvious that diabetes in the family is going to affect the brothers and sisters in many different ways. It can, and often does, bring them closer and they show a protective approach if anyone criticises their sibling with diabetes. But at the same time, it is natural that there may be some resentment and jealousy. Families have to work their way around these problems but being aware of them and attempting to meet them before they develop into permanent sources of conflict and sibling rivalry is half the battle. Talking about the problems within the family is important and it is not unreasonable to apologise to the brother or sister for perhaps not spending as much time with them as you would like. They need an explanation, albeit, within the limits of their age and level of understanding. They need to know that you love them just as much as you always have, and as much as your child with diabetes, and that because diabetes is serious, it sometimes has to come before everything else.
Tip from a Mum: "I found that blaming diabetes rather than my daughter [with diabetes] was the best way around problems – we could all hate it together then. It helped to make my son realise that when things were difficult, it was not his sister’s fault but the fault of diabetes."
Quote from a sibling: "Often one of the first signs that my sister was hypo was that she would get bad tempered and argumentative – this often happened before Mum realised that she was hypo and so we would both get into trouble. Then the penny would drop and my sister was given sugary foods. She came around feeling happy again, totally unaware that we had been very angry with each other, but I remember being left still feeling angry with her. Even though I knew she’d been hypo she had still made me angry and a biscuit for me didn’t sort out how I felt!"
But let us not forget that sibling rivalry works both ways!
Just as we can see that the child without diabetes feels jealous and envious, the child with diabetes can feel jealous and envious of their sibling because they are well and don’t have diabetes. They may even feel that you love their brother or sister more, because they don’t have diabetes – perhaps a difficult concept for us as parents because so much more time, energy and worry seems to go into the child with diabetes!
Here is a point worth remembering at times of conflict. What is the first thing we do in the mornings with our child with diabetes – blood test, injection, then breakfast. Essential but not the nicest way to start the morning! If injections and blood tests are difficult and a struggle to achieve [in young children and teenagers, for example] then there may also be a battle! So it is hardly surprising that they feel that you don’t care about them compared to their sibling. The role of a Mum is expected to be loving and caring – the person who protects, supplies comfort and does all the nice things. This image falls down when your child has diabetes – Mum has to do or instigate nasty things, starting straight away in the morning! No wonder they can feel unloved and resentful.
As parents going through our own grief at the time of diagnosis and having to learn so much, we are perhaps unaware of the effect it can have on our parents [our children’s grandparents].
A personal experience
My daughter was diagnosed when she was 5 and her brother was 6 – they had two grandmothers but no grandfathers. My mother had difficulty believing that Bev had diabetes and she was upset and emotional for a very long tome. Perhaps only now that I am a grandmother myself do I truly understand what she felt like. Grandchildren are very special – we can enjoy them, we can spoil them and we are free from the responsibilities we had with our own children. So I can now understand why my mother felt so upset when Bev was diagnosed. To a grandparent, it also seems so unfair that we are older, but it is someone so young who should have a lifelong condition like diabetes.
I’m quite sure that my mother sometimes felt I was being hard with Bev without realising that I was doing what I had to do and what I thought was best for her. But I was lucky, she never interfered or criticised. But I know of other families where this has not been the case, probably because of the difficulty the grandparents have in accepting diabetes in the family. The grandparents have interfered, have paid more attention to the child with diabetes, so leaving the other grandchildren feeling left out and ignored. However unintentional, they can leave emotional chaos behind them after a visit.
I have to say that my mother-in-law, Bev’s other Grandma, reacted in a very different way. There were similarities in that it was as if she had difficulty accepting it too, but her way of handling this was to ignore it. I don’t think that she ever understood the seriousness of diabetes or the effects it had on our family life. This was her way of coping and we are all different. It later became a family joke because it was tradition that she made the first cup of tea on Christmas morning and she always asked if Bev took sugar, every single year up to adulthood!
One of the most useful roles that grandparents play is as babysitters, especially nowadays when both parents need to work. But this is often difficult for parents and grandparents.
We, as parents, naturally find it difficult to leave our child with diabetes, even with our own parents. But grandparents may also feel that they cannot babysit because the weight of responsibility is too great or they do not feel to know enough about diabetes. These reactions are understandable but it does limit what the parents can do and it denies the grandparents the pleasure of looking after their grandchildren.
Quote from a parent: "My mother learnt about hypos, testing and food and I learned to leave my daughter with her for a couple of hours during the day to start with. Of course, I was always at the end of a phone. I could not leave her for overnight stays because she sometimes had severe night hypos and this would not have been fair on my mother and nor could I have slept!"
Winthrop University Hospital in the US held an educational programme for grandparents of children under 6 with diabetes. They learnt about injections, food, hypos and glucagon. None had provided overnight care but 50% had provided daytime care. There was a 3 month follow up after the programme and none had ‘graduated’ to overnight care – the reasons given were geography and parental fear of allowing others to care for the diabetic child overnight. However, most grandparents felt much more confident and more able to look after their grandchild, especially if an emergency occurred, and they all felt to benefit from meeting and talking with other grandparents.