People have very different ways of responding to illness – for women particularly, there is a feeling, and sometimes an expectation, that they should be the main carers with society often reinforcing this.
However, whatever the expectations in your own family, when faced with a terminal or long-term diagnosis of a family member, whether that’s an adult or a child, people’s coping strategies often cause friction. In particular, the main carer can feel misunderstood by other family members or their partner and frustrated when others put an optimistic spin on the situation.
Keeping hopeful helps some people cope better, but for others it’s unrealistic and they prefer to be completely realistic and deal with the probable prognosis in their own way. Carers who are faced with a relative’s deteriorating health on a daily basis can feel frustrated when those who aren’t involved on a daily basis insist on putting a positive spin on the situation.
In the case of a very sick child, it’s not at all unusual for the worry to cause problems between the parents and they are less available to one another and probably less patient that they might usually be under different circumstances. In addition, one parent might be trying to deal with life on a day-to-day basis and attend to medical appointments, give medication and cook special meals whilst the other one might use their energies to research case-studies, alternative treatments and possible cures. If one, or both of them, are very tired, which is likely, understanding and patience aren’t going to be in abundance.
Most people who have had a child with a serious illness know the worry and anxiety associated with this. If they have any expectations, they will often be that at least their family will understand. Sadly, this isn’t always the case and people often find that those that they thought would be the most supportive, show little or no regard for the situation, still having expectations of the parent(s), even though everything has been turned upside down and they can no longer be as ‘available’ as they were previously. This is a particular sadness and a cause of long-term resentment – it’s also hard to work through those feelings when the people you thought you could rely on show a hardness of spirit that’s often devastating.
If a child is born with or develops a long-term condition, parents can feel that the demands upon them have no end and find it extremely difficult to cope. The questions they might want to ask are:
- “Is it worth getting another medical opinion?”
- “Is there a better medical regime for my child?”
- “Could I be doing more?”
The same questions also apply if you are caring for an elderly parent, a sibling or other family member – most people want to do their best for the sick person but almost inevitably, it brings concerns and sadness, exacerbated by the tiredness involved in caring.
However, some families can and do thrive during difficult times, whether this is about caring for a child or an elderly parent with a chronic illness. It can actually bring people closer together as they find that they have to communicate more openly and this can provide them with a feeling of mission, pride and cohesiveness.
One important part of all this is that you alone cannot solve all the family problems associated with your child’s/family member’s illness and it’s crucial that you don’t isolate yourself. However caring you are, you will need time to yourself to relax, wind down and socialise.
There are social workers, family therapists and support groups who will hopefully be able to provide advice and, despite funding cuts, possibly put in some professional care at certain times. Social networks are forums are invaluable too as you can message people in the same situation. Although this can help you feel less alone, beware of not going down the road of getting into miracle ‘cures’ or negativity about the prognosis as neither of these is likely to help you in the long-term.
Try to access support from your extended family and friends (but remember, as I wrote above, they won’t always have the insight to understand)– don’t carry on and tell them that you’re “fine” as you’re not probably not; if you don’t tell them this, they often won’t know, even if you think it’s obvious. Being open and clear is the most honest way to progress here – most people will help you if they know that you need support at times. Friends are also invaluable at such a time and you can ‘let rip’ about the situation when it becomes too much at times.
This is when counselling can also be helpful, especially if you’ve found that your partner and family don’t really understand. To find out more about this, you can e.mail me at firstname.lastname@example.org or phone me on 07956 986 693.