Clears skies? Believe it when I see it matey. Most astronomical events are hidden by our ubiquitous full grey protective(?) Cloud layer.
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.
Today was a ‘taster’ day or rather an assessment of suitability for accessing adult day care for dementia Mum.
Providing Mum with enough mental stimulation is perhaps where I worry I can’t quite match up. We were never super close. She was always a glass half empty person. She never really had hobbies and the personal interests she did have now don’t appeal.
It’s hard to get Mum interested in anything much aside from looking at the birds in the garden. The rest of the time she bemoans the sheer pointlessness of her existence. But then that’s how she always was. Amazingly dementia occasionally gives her a child-like sense of wonder I’ve never seen before. But things turn on a sixpence (to quote a pre-decimal currency saying).
The fibre optic novelty light that held her transfixed can suddenly become something that’s “not up to much”. I can relate to these change of moods as they mirror the black cloud that can so suddenly descend on those of us who cope with depression. Out of nowhere a sense of pointlessness.
As is the case with today’s flurry of mental stimulation. All laughs when I picked her up after her few hours sampling day care. Now she says “I’ll pay for this” and it was all too much. Good experiences often get re-experienced through rain tinted glasses. Pick-me-up experiences become pointless, distressing, nightmarish. Reality and the unconscious, the dream world and the imagined are all valid. You can’t tell a dementia sufferer that something is in their imagination because imagination is as real as the supposed ‘real’.
Anyway the specialist day care centre is happy to have her one day a week. Maybe it’s more about giving me a break than giving Mum a more stimulating environment.
What do I want to do with this time off? Sleep. Just sleep.
In February my 89 year old Dad died suddenly after a few days of illness. He went into hospital on a Sunday. By Monday morning he was diagnosed with leukemia. By midday he had died of a bleed to the brain. After a lifetime of good health it was characteristic that he took a ‘no faffing’ approach to leaving us.
He was the main carer for his wife, my Mum who has dementia. They both always resisted our help though it was becoming evident that standards were slipping and their home was getting grubby. Dad also wasn’t a natural carer despite half a lifetime teaching first aid (you know how it goes. Up there with hairdressers with appalling hair, unhealthy doctors and teachers unwilling to learn new skills).
So it was a bit of a shock as to how much was not being done for
Mum. I can’t blame Dad. He was 89. He learned to cook, to a fashion, at age 85 but on the whole he left Mum alone for hours and didn’t really check her state of cleanliness. Nobody is perfect. We all do the best we can. In addition I may not have realised quite how much Mum had declined in recent months.
So, since February my old non-life was suspended and I became her carer. It’s been a steep learning curve. We were left a mess financially. We have no lasting power of attorney. We haven’t even started processing Dad’s will (and despite decades telling us that all details were in his wardrobe and who the solicitor was, both turned out to not be up to date information).
Add to this a very violent disagreement with my sibling over caring for Mum and as many carers have found, the complete evaporation of family and partner support in caring for an aged parent with care needs. Add my own battles with mental health issues and worries that despite doing better than I would have imagine, it is very early days and I could be quacking like a duck by Christmas.
It’s a reversal of roles. I am the sudden responsible adult whist the former responsible adult is like a confused, frightened child who has no idea who I am or my relationship to her. Tears, tantrums, humour, pathos and a broken, underfunded care system.
It’s all been like an ongoing soap opera. As life often is.
And it’s ongoing.
So forgive me if I think outloud here in future.