For the carers

 Caring for each other

I’ve taken a big step this month and I’ve got help from carers, especially to let Andrew get out without worrying. I’ve found it hard. It’s an acceptance of my situation, a dependence on others, accepting strangers in to your home and that’s just the start. There’s an emotional toll I hadn’t anticipated; a rollercoaster of trust and testing patience for me at least. 

I’ve decided to have direct payments but chosen to do it through an agency so I’m not acting as an employer. I didn’t quite anticipate the scale of the task if I’m honest, I was drawn to having control over what support I want. 

But these times of shortage of carers that frankly is an illusion. I started out hopeful but soon learned the complexity of my needs were a stumbling point, they really want a daily/weekly commitment that fits with a business model.That’s at odds with a person-centred model and reflects that profits drive    decisions in so many of the agencies. 

It took several dry runs to recruit an agency at last. I thought I had one and they failed to supply a carer three weeks in a row, telling me the afternoon before. Frankly I was angry and totally lost trust. I won’t name and names and I do believe these are exceptional times but the lack of honesty was what made me cancel the contract ( which was all loaded against the client, requiring for example one month to cancel a visit or you had to pay!). 

But fortune favours the persistent and following a request through care sourcer, a website shared with me by the Occupational Therapist, resulted in a visit by the manager of an agency which puts quality care at its centre. All the agencies say that but here I’ve seen this in action. They speak a language of compassion and they really show it too. Many of them are originally from Africa or other parts of Europe and I love their warmth and care and that they bring diversity to my life which has shrunk in recent times. I found it stressful at first, having to explain so much and seek the right balance for us all. But it gets easier and they bring cheer and kindness too. What’s not to like. 

I remain on chemotherapy but haunted by bladder infections which take me up and down a ladder of well-being ( more down really). I’m beginning to wonder if I can keep this going. In the main the team in the chemotherapy ward are great, quietly efficient and thoughtful but we met the exception to that last week.

And it’s an issue so many disabled people will recognise when they interact with healthcare, the people who think they know better than you and your carer do about how you mobilise and function. A sort of nursesplaining( I’m very experienced a phrase that was used when they clumsily tried to help me into a chair). They made me have a minor panic, standing right in front of me, rather than asking what I needed. They then bossed around Andrew like he didn’t know what to do either. We were both angry and it damaged trust ( that word again)and kindness was sorely missing. She apologised in a fashion and I suggested we start again. I think after that she did her best but really it wasn’t good enough on a ward when there is so much vulnerability. I found myself feeling sorry for her, sensing she knew she was falling short. 

But the reassuring thing was that she was an exception and that reflects well on those who do it well most of the time. It’s a busy and relentlessly emotional place to work ( and to be in as a patient), kindness and care need to be the glue to hold it all together including for the team. 

So this blog is to give thanks for the carers whoever they are, especially the families steadily alongside us, unsung and without reward. Thank you, all of you. 

Summer days, drifting away

 

Summer days drifting away 

When I did grief counselling it was striking that the bereaved often found summer worse than winter, when adapting to losing their loved one. Winter allows us to coorie in at home, the rest of the world closed off from our experience. But summer rubs your nose in the pain. Postcards from another world, of families, intact and making memories. The grieving sit alone, an acute longing separating them from how summer used to be. 

I recognise that feeling as my summer moves slowly. Bereft of holidays or breaks from the relentless slog of chemotherapy. On top of my chronic pain and disability, life feels like pretty hard work with little return. 

And yet I know it could be so much worse, as my treatment plan left out taxotere from the typical regime. With my existing conditions it was thought to risk tipping me over. I worried it would knock me down and I literally wouldn’t be able to get up again. So I’m not as sick as I might have been and I have my hair so far. But a recent urine infection showed my vulnerability and I struggled to get through. A relentless headache led to having a head CT to rule out brain metastases. Thankfully it was clear but it does hint at how things have been.

And over this time I see others making the most of their summer, having holidays seeing other places and I envy them their break from the routines of life  and seeing new horizons. I just feel the need to have something to look forward to. But with covid at the highest levels yet going amongst others is risky. I wear my mask against a tide of indifference and denial. 

My friends and family are literally keeping me putting one foot in front of the other. Also climate change temperatures ( even in  Scotland!) have taught me the danger of being too hot. I slept most of the days when the temperatures were over 30 here with no hint of a wind. I’m suited to cooler temperatures I’ve decided. But I watch the evidence of climate change with cold dread for future generations.  Being a political geek the recent democracy farce that is British politics would have acted as high entertainment. But with so much angst about cost of living rises and climate change it failed to entertain me but instead forces people like me to realise just how politics is separated from reality or compassion. Not much to laugh about there! 

So to all you who are struggling this summer, I hear you. It’s enough to get through for now and here are my very personal suggestions. Be kind to yourself and to others. That can be enough to change someone’s day and it will definitely change yours. Oh and eat ice lollies is my other tip, aside from midget gems they are my best guilty pleasure. Yes my life is a riot!