Long time no scribbling…
Primarily because I’m a full time carer for my Mum who is in the final stages of dementia. Following a heart attack whilst in respite, a less than stellar experience on an understaffed hospital ward where she soon contracted hospital acquired pneumonia and a succession of other infections ( hospital is really no place to get well) she was sent home with a hastily prepared care plan.
Hospital for the elderly is frequently a risky prospect in that they are vulnerable to infections whilst in there and their needs are poorly catered for quite often. Money, politics, culture etc.
Naively I was gearing up for rehabilitation but within hours of being back in her own home a visit by the home visit doctor (a whirlwind of testosterone and an over abundance of swagger) adjusted my horizon.
In that way that the medical profession have of medicalising people he pronounced the hospital experience a “terminal event”. He promptly withdrew all preventative medications and signalled end of life care.
Suddenly all the things it had been hard to access prior to this point care-wise soon came to us somewhat easier. We had a Macmillan nurse, district nurses, palliative care, telephone support though it was still me doing the bulk of the caring, feeding, nutrition, medication, signposting only with much less time off than previously (bye bye daycare, so long respite).
Mum is bed bound, in and out of delirium, barely able to eat other than liquidised through a straw. That aside there are moments of brief lucidity, smiles and laughter punctuating the pain and confusion.
We finally had to resort to diamorphine injections such was her level of constant anxiety. It’s a great drug for relieving suffering but it does remove the last vestiges of a slim ability to communicate. It’s perhaps the drug that clarifies that the end may be nearer. It’s use may be too soon, I’m not sure.
I constantly think the end is very near and then Mum bounces back. But dementia only goes one way. So it’s still end of life care with end of life options.
It’s still very tiring but I wanted to do this
It’s been a steep learning curve. I fell out with my brother over doing this and found my partner could not help either. You have to accept that those closest to you might not be able to walk that path with you. We all have different qualities. I didn’t think I could do this either.
So, for now I share the final weeks, months with a declining parent who doesn’t know who I am, who can spend an entire night screaming, singing,frequently both punctuated by the kind of sleeping a cat would be proud of.