The chasm of dementia; a carer’s perspective

Sue Newsome supported her Father during the last year of his life after he was diagnosed with Vascular Dementia. In this blog she shares her thoughts and feelings from a carer’s perspective.  

bench-forest-trees-pathSupporting someone with Dementia is a contradiction of what it is ok to feel and the guilt about those feelings. A whole raft of thoughts, feelings and behaviours that I continually checked and reviewed. My relationship with Dad changed, he had never said he was scared before and I was to hear this from him throughout his Dementia journey.

Initially in his phone call to me telling me ‘Sue I am scared I am having a Stroke’ which although slurred was articulate, to the same feeling the night before he died when despite his end stage Dementia and aspiration pneumonia, when he struggled to breathe, he managed to say ‘I’m scared’. His fear and mine punctuated our relationship for the last year of his life. Our fear of the future what it held and how we could adapt. It felt like I held my breath for a year. Living on adrenaline, the skipped heartbeat when the phone rang, what had happened to Dad this time!

A catalogue of illnesses and injuries from delirium when the fear in my Dad was palpable. He endured 12 hospital admissions in 13 months!  A transformation from a kind, gentle loving man to someone who I didn’t know, and who didn’t know me. Someone violent who tried to bite me bend my fingers back, swore at me and insulted me. His physical deterioration and admission to hospital triggered an unrecognisable personality transformation. Delirium was a regular occurrence which professionals struggled to manage and I dreaded.

The gradual deterioration of Dad’s physical and cognitive functions were devastating, his own body conspiring against him as he bravely fought through.

The guilt that whatever decision I made may not be the right one, made me cautious to take the next step, this was because of bitter experience. Decisions I made and battles I fought with red tape and  professionals who told me ‘my reactions were disproportionate’, were led by compassion for Dad. I had not experienced this journey.

I wished for Dad to be free from agitation, torment and pain then felt guilt for wishing him dead. Comments he made pierced my heart, ‘I am sorry for being a nuisance’, ‘My memory is shocking’ and ‘Thank you for being patient with me’ were spoken with conviction 4 days before he died, where did these thoughts come from ? How did he articulate them? Fragments of his fragile memory momentarily coordinated. Holding my Dad as he died I hoped he knew I tried.

The emptiness his death has left is interrupted by shards of memories, the what ifs and the if only! I survived this journey because of the dedication and empathy of a few amazing professionals who cared beyond it being their job. I was enveloped in compassion at the end, nursing staff and consultants who held me and reassured me at the most devastating time of my life. My Dad is now free from the curse of Dementia, he fought a courageous battle to the end.

RIP My amazing Dad.

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