Dusty

 Today is Ash Wednesday, the first day of Lent.

This is the day when, if you are at the more liturgical end of expressions of Christianity, you probably go to church and the priest has some ashes made from burning the palm crosses given out on last year's Palm Sunday, and makes the mark of the cross on your brow with those ashes, with the words "dust you are, and to dust you shall return" — a reminder of our mortality.

It was thinking about those words, and about the process of returning to dust.

The other day someone was talking to me about visiting friends in the same age group as she and I are (65-80yr ish), who are both unwell — that's why she was visiting them. One has cancer and the other has an unusual form of dementia giving clarity of mind but profound physical disability. The one with cancer needed surgery, but is the sole carer for the one with dementia. So friends rallied round and provided a round-the-clock care rota for both of them, and that all went very well. But then the surgical scar gave some issues and further treatment was needed, requiring further care support. The couple decided they'd imposed too much on friends, and chose for the one with dementia to go into a care home for a few days while the one with cancer underwent the extra treatment. The care home cost £1800.00 a week (that's about $2500 US).

So the one with cancer was a day patient, not staying in the hospital, and therefore was able to visit their spouse in the care home. The one in the care home had found a rapport with two other residents of the same sex on arrival, and a request had been made for them to sit together at meals. On visiting, it turned out the request had been ignored, that for all meals our person had been sat with much older residents of the opposite sex, whose minds had gone. The meals were served not on dinner plates but tea plates — tiny portions, a fraction of what our person would normally have. In addition, our person was routinely sat in a little tub chair, slumped over for lack of support, while a suitable wing chair stood empty nearby. They were also found with their shirt buttons done up all wrong (not by them since their condition made buttons too difficult) and on once occasion wearing nothing but underpants and a sock. 

The spouse with cancer decided this was not value for money at £1800 a week, and discharged them.

Instead, a waking carer was employed for the nights, at £345 a night ($465ish US).

The first waking carer, a woman, was found fast asleep in the morning, having gathered all the sofa cushions to make herself pillows allowing her to go to sleep. Hmm.

The second waking carer was a man, who arrived on an earsplitting Harley Davidson and started by playing loud music in the living room. His first question was "Where's the sofa?" There wasn't one, because the reception room in the couple's small retirement home had been re-purposed as a bedroom since both were sick and the cancer treatment precluded them sleeping together. So the 'waking' carer was disappointed to discover he couldn't just go to sleep. As things turned out, having been booked to stay through to 9am, he left at 7am because something had cropped up for him and he needed to go home. So he just left. The spouse then discovered this carer had turned off the baby monitor allowing him to hear the person he was meant to be looking after, with the result that the person he'd been employed to care for had not been able to make themselves heard, and wet the bed (for the first time ever). 

For £345. Not good, eh?

A while ago, a friend of mine died from liver cancer. Durning her phase of terminal illness, Class A drugs (her morphine) were stolen by the daily care people she employed to feed her and give personal care, and her doctor refused to replace the drugs (leaving her with no pain relief) until a mutual friend made a huge fuss; and a fake 'nurse' called at the house and obtained the key code from a sitter covering the time between on friend on watch and the next.  

Our friend had made an agreement to go into hospice care for the last stretch, but that never happened because the hospice refused to take her until it could be said that she would die within three days. When she reached that point, the hospice refused to take her because they said she was now too ill to move.

When she eventually died and her friend called the surgery, the doctor asked her to strip our friend who'd died and video her so that the doctor could verify she was in fact dead.

All of this gives me a certain amount of concern as to how we — me and my husband — go about safely landing our own plane, as it were. I am not in favour of euthanasia (though I do understand why people opt for it) because I think our lives are in the hand of God. 

Both I and my husband are chronically ill, he from Parkinsons and me from a mystery ailment defying diagnosis that causes relentless strong pain. I think I may have oxalate poisoning, and am working from that supposition for now. 

What I notice is that it's as if there are four of us, not two. Each of us is the person we always were, with our habits of mind and personality, but each of us now has this old person to look after. He is the man he always was, but in addition he has an old man with a draggy foot to take care of. I am me, as I always was, but I also have to create strategies and diet plans for this old woman attached to me, and try and make her eat what she should and cheer her up and take her for walks, and maximise her health so she and I will be able to get it together to care for the old man that is the exterior shell sitting around my husband. At the moment he's doing very well and has a full and busy life, but I want to be the best version of myself I can be, in case my help is needed in the future.

It is extremely important that we educate ourselves and strategise intelligently, because what I have seen of the care provision available convinces me that even if we could afford £1800 a week or £345 a night, nobody in their right mind would want what that buys.

Dust you are, and to dust you shall return. Yeah, tell me about it! 

I conclude that the only realistic option is to trust steadily in God and do our best. What will be will be.

And I haven't been to the ashing service, because I don't need the reminder. We're getting dustier with very passing year!

I think of friends I've known, and family members, and people whose funerals I've taken, who lived calmly and peacefully, then with no warning died quietly in their own armchair or bed, in the course of an ordinary day; and I pray, quite often, "Father, please may I have that, too."