Does anyone else get these feelings of frustration in their caring role. I think i feel like this because i don't get support with my feelings from my husband. I feel that he leaves all the responsibility on me. He moans when i need to talk to get things off my chest. He thinks i am moaning. He dont realize that i need a rest sometimes too.
Empathy is an often misused term because it does not always address the sheer depth of understanding which is a must in caring for someone living with dementia. In short, sympathy and the uninformed mind, however meaningfully applied in respect of wanting to understand, is in fact a yawning chasm removed from actual day to day caring. Frustration is part and parcel of this caring role but one has to be aware very profoundly that it can only exacerbate what is already a hugely challenging responsibility. When someone is laying in a sick bed, with all manner of leads and tubes sustaining their life, it is so much easily understood. Dementia can be as critically important in fact, but presenting behind what might seem to be simply uncharacteristic or plain awkward behaviour fluctuating between familiar if " frustrating" patterns of such, makes it less recognisable as both a genuine terminal and genuine uninvited illness. Every one of us is different. In dementia that becomes in itself a major element in the sphere of Care. Music, games, leisure activities which were once a regular part of a life can be compromised when cognition has become tainted or damaged. When sight deteriorates some people find solace in ' talking books', some in music. In the Care Home they strive to apply relevant positive " activities " to all residents, accepting that there are those who do not find a desire to become involved but rather sit quietly in their own " thoughts " and be contented in themselves, whilst the regime of meal times and coffee breaks provides a kind of 'security ' replicating a " home from home " environment which is continuous and ' safe. All of this fundamentally is complex, even when very well practiced because every single person living with dementia is different and as we well know, the brain is immensely complex and when diseased even in the early days, creates major challenges for the recipient primarily and major challenges and huge responsibility for the one who is Caring for that individual. When all of this confronts you in the home, the place which functions in apparent " normality " it is often unseen in very early days as problematic. Yet, as is so poignantly demonstrated here by way of the many varied and often tragic accounts shared by both men and women who are living the enormously demanding role of Carer, this relentless disease termed DEMENTIA is so very often misunderstood and seen in many ways as an inevitable feature of ageing and the promotional images of Care facilities by way of glossy brochures or media generally, unwittingly omit the raw actuality of what Caring can become or can imply, especially in the domestic or home environment.
So a frustrated " moan" can in essence be a cry for help initially , but perhaps most importantly - awareness and sincere awareness at that, as to what we are talking about.
A life no longer governed by its owner... A life which needs protection.... A life which is subject to a totally indifferent disease.... A life which no longer equates to 9 to 5... A life like any other life and just as viable and just as precious as any other life....
A life which now lay in your hands....
Therein behind the frustrated "moan" is all this and more. And for those who might point an accusatory finger when you deliver the " moan" - then gently suggest that they trial just one day in your shoes.... after which you remind them that just one day does not represent a week... a month...a year... a decade of Caring.
That is the reality.