The guilt that comes with a diagnosis of dementia reared it’s ugly head again last week. I sat with 2 male playmates, both married, one living with dementia, one the carer for his wife.
They were talking about their situation if the carer had to go into hospital. The person living with dementia felt huge guilt as his wife was due to go in for an operation but was worried about how her husband would cope, who would care for him? She was considering cancelling the operation as they could find no support services to help. The playmate believed he could cope but knew he may forget to do things and was trying to reassure his wife but the over arching emotion was one of immense guilt at having to put his wife through that thought process when she had enough on her plate with an operation…..
The other, the carer, had never thought of the situation where he would have to go into hospital…..who would take care of his wife? She needed support and wouldn’t cope on her own for a long period. Once again, the tears welled up, the immense fear, the stress of a simple thought.
It’s often been said that carers ‘suffer’ and people with dementia try and ‘live’. There comes a time when we (people with dementia) become oblivious to the situation around us. It’s then that the hardest times must inevitably be for those caring. At least, before we ‘go over the edge’ into someone reliant on others, we can talk to our loved ones, comfort where we can. But when we’re no longer capable of seeing the situation in all it’s glory, the emotional stress is in the sole ownership of those who care.
So what about people like me who live alone? Well I still have guilt, the guilt of impinging on my daughters lives unnecessarily. Of having to rely on them to do some things for me when I know how busy they are. I try not to ask as I want them to live their lives.I’ve always told them, I don’t want them to be my ‘carer’, I want them to remain my daughter at all times…..should I still be around when I ‘need care’, then I’ll allow others to do that… reluctantly.
But I don’t have the guilt, of being with someone I married, someone I hoped to share my life with into old age, of them seeing me deteriorate, of becoming reliant on their existence….I see that as an advantage of living alone. I can repeat things to myself all day long and not annoy me. I can sit in silence if I want to without feeling guilty about not engaging in conversation. I can get things wrong in my own home and have no one worry about what I’ve done………I don’t have that guilt…
One story sticks in my mind. Of being sat with a couple somewhere. The husband had dementia. The wife was saying how she would never see her grandchildren again as they now lived in America. It was ‘his fault’. The guilt on the mans face as he lowered his head in shame, was tragic and still stays with me.
Sadly we have no control over dementia. We can do everything we can to slow the deterioration, as I hope I’m doing by doing all I do, but the guilt that dementia brings is the cruelest guilt as there’s nothing we can do about it.