Looking After Mum and Dad - the journey so far
Thank goodness for Age UK.
They've given me the inspiration and the confidence to push forward for the things I need to make my mum and dad's life more than just an existence of trying to survive the day without yet another fall, episode of being unwell or sitting asleep in the chair.
It all started last year when we realised something wasn't right with mum. She was at times forgetful and mixing up the names of her grandchildren and she just wasn't quite there with us. But these were fleeting moments and we just put it down to the occasional off day. She's 75 and allowed a couple of those now and again.
She became unwell with vomiting and took to her bed, which led to a hospital admission and a diagnosis of a heart attack. She went for an angiogram - I waved her off, as they took my normal mum - calm, smiling and trusting me in that what we had set her on the road to, was the right thing for her. After all, how many angiograms have I sent patients off for? They've all been fine.
That was the last time I saw my mum as my mum. I wish I had known and I'd have hugged her harder or even just stopped the whole thing. After five hours - way beyond how long they said it would be, a rather worried looking doctor arrived back on the ward ahead of my mother's trolley. Does she have some cognitive impairment, he asked, after explaining she had not coped with the procedure well. She was lying on the bed looking bewildered, lost and agitated. She'd had some standard sedation ahead of the process and had become severely agitated as she recovered.
For the rest of the day, my normally calm and sweet mum had been taken over by a screaming, kicking, swearing, biting and occasionally choking woman. She tried to eat the cardboard sick bowl, she almost obstructed her airway with vomit, she kept repeating that she was going to have an injection. It was delirium and whatever that sedation triggered - it has left something of that behaviour behind. I heard my mum - a Muslim woman who wears a headscarf say the F word repeatedly. Most of the time at me, and she was entitled to because I didn’t protect her and stop her from going into that procedural room.
After 4 weeks in hospital, with the majority of that time with me staying with her, we went home. She settled but she's not the same mum. Mum has had a diagnosis of dementia that's possibly come on harder and quicker because of the delirium as a consequence of the angiogram and sedation.
Turns out she does need a bypass and a fair few of her heart vessels are blocked. But she's not stable enough to go for a bypass. Imagine her being as agitated as that after the procedure, with a chest wall having been operated on. So instead it's maximum medical management and drugs to keep her blood thin.
Along with her cognition, went her mobility. My mum has become a faller and with the added runny blood, it daily freaks us out. I send a fair few folk, as per the NICE guidelines off to CT for scans of their brains after falls. My mum has become one of those.
This year around April, we got the formal diagnosis of dementia. And as we have adjusted to live with that diagnosis for my mother and all that entails we started the journey into the labyrinth of a world that deals with care of the elderly and those with dementia in the community.
It has been traumatic. Today was a bad day. I'll bring you up to date. In a nutshell, the local authority agree that my mother needs 24 hour care and that she can have it at home. She’s been financially assessed and is entitled to full funding for her care. It now boils down to who will provide that.
The Clinical Commissioning Group (CCG) have a department called Continuing Health (CH) who carry out assessments to see of clients/patients will come under them and in what way. And if it’s not them, then it falls back to the local authority to foot the bill.
The care of my mother and it's provision is going to be funded by one or the other. For dementia patients, if the CCG's CH team accept a patient for full funding, it unlocks funding for care and other adjuncts to support the dementia patient. If they refuse based on their assessment or decide partial funding which only comes into force if the person is put into a care home then the patient will remain with the local authority and a level of funding that will cover care but nothing else. The CCG offers scope for a holistic 360 approach to dealing with dementia patients, as has been explained to me by social services. We had already expressed as a family, that mum was staying at home and told the assessor. She decided on partial funding - having warmed us up to the idea at the beginning of her assessment and then four hours later saying - yep it’s partial funding, the thing I told you about at the beginning of the meeting. Does that sound a little weird or what? And we had already said we were looking at home care, not nursing home care so obviously we weren’t accepting her offer. Nursing home care is actually more expensive than home care, but I’ve learnt along the way, there is a tendency to favour that outcome by higher authorities. Why I’m not sure.
So here we are in between social services, who have done a brilliant job advocating on behalf of my mother and the CCG who have decided that after a 4 hour assessment with a nurse assessor, that they know my mother well enough to dispute what both the family and the social workers, who have been supporting her and know her well since discharge in Jan).
And I hear from our Age UK case worker that we are not alone. So my question is, how many other's are stuck like this? I'd just got off the phone to this particular CCG’s Deputy Director of Cooperate Services and the first half of that phone call was, to say the least, challenging. I did come out of it feeling distraught, broken and admit to crying as I walked along my own hospital corridor. I felt humiliated. To be fair the last quarter of that call improved - maybe she could hear how upset her tone, analysis of virtually every comment I made and stonewall cooperate tone was making me. She's a former nurse and I'm relived to say that in the end of the conversation, I found the nurse in her. She's still in there. And we are talking.
This has all made me consider this journey - because that is what it is. And I know many of my friends, colleagues and peers are at similar stages of life with their own ageing parents. Nobody warns you of how it's going to be. The fight for my parents and what they need and the dignity they deserve has possibly been one of my hardest challenges to date.
And that's why I've decided to share it. We aren't there yet, we are still en route but if anyone else out there is having trouble navigating the system or has been hit with decisions about care needs of your loved ones and need some ideas on what to do next, well I hope you get some advice here.
So this is where we are at :
1. I’ve written to the CCG hierarchy describing what happened at the assessment meeting. When the nurse assessor laughs as you are giving accounts of incidents you are sharing with them to demonstrate the risk your mother is facing, it's worth mentioning.
2. I've written to the Foundation Trust to inform them of the events too and to outline that certain things still haven't happened, like OT assessments int he home some 9 months later. They’ve responded positively and are looking into it.
3. After assessing the situation thus far and the experience of this morning's phone call, I've contacted lawyers. I've identified that for the sake of my own mental health I can't do this alone anymore. And on speaking to the lawyers, I realise I am one of many. And that's the point - whilst you are doing your best to care for others, look after yourself too.
4. I've got in touch with the MP - who's office also state that this is not unique to our family.
So how widespread is this culture of box ticking, moulding people into certain target filling boxes, to fit what I do appreciate, is an overstretched budget? But does that mean, accessing care for those who's conditions warrant it, are left vulnerable whilst the debate of is going to pay for what ensures? What happens to those who have no one to advocate for them?
Our journey out of the blackhole began with a visit from Age UK and our case worker, who gave us the education we needed in helping us find our way through this. Make sure they are your first port of call.