As any long term illness develops responsibility can often shift towards friends and family members to provide care and support. Often the contribution by friends, family and caregivers can be forgotten throughout the medical management process. However the emotional impact on friends and family members can be drastic. We’ve all experienced a close one suffer ill health, it can be extremely difficult to deal with.

I had a conversation the other day which got me thinking about the emotional impact of the development of a long term condition, or even a death. The individual I was speaking to said that they feel guilty, because they didn’t necessarily miss having to care for an individual who was experiencing a decline in their health. This was rather upsetting to me, not that the individual in question didn’t miss the other, but rather that they felt guilty to the extent that it was influencing their mood and behaviour.

Never ever, ever, ever, ever, feel guilty about your feelings. There is no denying that some illnesses influence more than just the individual diagnosed. It can be a great burden for many and often reduce caregivers quality of life. This is a fact and not something to feel guilty about. It is in my opinion ignorant of modern society to create such a paradigm and social pressure about caregiving. How one feels about caring and the development of somebody else’s long term condition is not to be judged or looked down upon. If you feel tired and fed up, that’s normal. If you feel spiteful or unappreciated, that’s normal. If you feel sad, distraught and like you are losing hope, that’s also normal.

I’m not saying it’s a positive to have these feelings, but it certainly isn’t something to feel guilty about. It’s in my opinion a flaw with the current medical model that caregivers aren’t provided with more support, or more of a community to allow discussion of the emotional impact of providing care. Some fantastic applications, such as Talking Point, for friends and family of individuals diagnosed with dementia, are providing at least partial solution to these problems, but there’s still a lot more to be done.

I’m of the same opinion when approaching the topic of death. Many individuals feel a sense of relief after an individual diagnosed with a terminal illness passes. Because relief is felt it does not bring into question one’s love or compassion for the individual. Sometimes being there whilst someone deteriorates can be extremely hard, it can be too much to take. That’s ok.

What I’m trying to get at here is this… If you’re feeling guilty about your emotions, stop. How we feel is how we feel, everybody has their own way of dealing with things and that’s ok. I’m just hoping that in the future, more support is provided for the silent sufferers, the friends, family and caregivers, because they’re often the ones who need it most.

Jack Barton (Researcher, Rescon Ltd)