Five Things I had Forgotten About Having Carers

According to this blog it’s nearly 9 years since I stopped having carers.  My care package to manage my lymphoedema has been in place for just over three weeks now.  And it’s going well. Most of the carers I’ve met I’ve got on well with (some I’ve only met once so it’s hard to know how I’ll get on with them) and there haven’t been any of the problems I anticipated with getting my wraps applied tightly enough. I am however remembering several things I had forgotten about having carers.  Here are five of them.

1) Your time is not your own. Just because the evening visit is scheduled for 8 doesn’t mean it’ll happen at 8. Officially they are allowed to come 15 minutes either side of the time without letting you know. But that doesn’t account for the times they changed the scheduled time to earlier and forget to tell you.

2) Never make an attempt to finish reading your book or watch a film before the carer comes they’ll turn up as you’re about to finish it when the ending has just got interesting. The same applies for making dinner to be ready not long before they come

3) The actual carers who come out are brilliant but invariable you’ll get annoyed with the people doing the organising because it’s a difficult job filled with bureaucracy and bureaucracy and being able to live your life with support aren’t good matches.

4) Every carer needs a different level of reminders/prompting when doing your care and it’s a really tricky line to negotiate between giving someone enough instruction to do it right and so much they feel you think they’re stupid. It also requires remembering who which applies to.

5) Everyone you’ve ever met has an opinion on you having carers and for the majority of those (especially from those who’ve never had carers themselves) it’s best to ignore it.  The experience of care and how the system works is very hard to describe and it’s probably best not to try.

Random Bullet Points of Life

For the little things worth mentioning but perhaps not worth an entry of their own

  • For several months (maybe 8) I’ve been involved in doing social media for CAB. I have a bit of a love hate relationship with it but I do find the twitter feed of who the account is following very interesting. I keep thinking I need to add some of those people to my own personal feed. Also looking at the feed is a bit of an example of how not to do twitter – whoever set the account up followed three local newspapers. All three will tweet the same story at the same time so it shows up one above the other in the feed.
  • Yes, I am aware that CAB stopped being called CAB some years ago and is now just Citizens Advice. Some names die hard. Particularly on blogs where I can’t be arsed to type the whole thing.
  • I am writing fanfic again! The last time I remember doing that is 2004. I’ve spent a lot of time since then saying I’m going to do it but not and I’m horrified to realise it’s been so long It’s not online yet and won’t be for a few months.
  • I’m doing a lot of crochet at the moment. Squares for Woolly Hugs and a blanket that started off being for Woolly Hugs but now may be for me.
  • We went to two comedy gigs last week. Rob Newman was good and managed to make a topic I know little about – Philosophy – really funny.  Shappi Khorsandi was crap but marginally less crap than the last time we saw her (she brought two warm up acts – her son, who is maybe 12, and her brother). Of course all she had to do to be better than the first time we saw her was remember her set so the bar wasn’t set very high.
  • We’re working on Tenants Times right now. Which probably explains my current obsession with where I should and shouldn’t use commas in my writing. And the amount of time I lost to the fact that a sentence in a book (one sentence!) would make a lot more sense with a comma in it.

Random Acts of Kindness Part 1 by Victoria Walters

I was lucky enough to receive a free copy of Random Acts of Kindness Part 1 by Victoria Walters in exchange for this review.

This book is being serialised in 4 parts coming out roughly every two months. Part 1 came out in December, Part 2 has just been released (never let it be said I do things in a timely manner), part 3 will be out in April and part 4 in June.  I enjoyed part 1 and am looking forward to reading part 2 tomorrow. I’m disappointed to have such a long wait for the final two parts because I can’t wait to read them!

Welcome to Littlewood, a small town community with a big heart. Abbie has fled London and the humiliation of not being able to make rent after being made redundant. Louise, seriously unlucky in love, has thrown herself into her career at the local hospital. And Eszter, who has travelled from Hungary with her daughter, Zoe, hopes to reach out to the mother-in-law she never met while her husband was still alive…

Can a little bit of kindness really change your life? Three very different women are about to find out…

This book had pretty much everything that I love in a book in it. A fresh start, a secret or two, friendships, family, a challenge and even cake. The characters were brilliant and within a few pages it was already becoming clear that I was really going to like them and enjoy this book. It made me laugh and smile and left me with a happy feeling when I finished it. It also surprised me in several places and I’m very keen to read part 2 and see what happens next – I’m not sure I want to guess because I’m pretty sure I’d get it wrong.

One thing that Random Acts of Kindness had was a big sense of community spirit and I loved the way everyone reached out and helped those who need it, even if they didn’t know them. Life would probably be a lot better for many people if the real world worked like that.  I read most of it sitting in my favourite coffee shop with a piece of shortbread (one of the staff commented that I’m a bit addicted to their shortbread. She’s not wrong.) but I did kinda wish it was some of the cake from Brew, the coffee shop in the book because that sounded yummy.  It was a cosy and warm read and the perfect way to fill this gray, damp February day.

I can’t think of a better book to be my first review of 2018 and I’ll be reading the remaining parts of publication day and looking out for more from Victoria Walters.

Say My Name

I’m kinda well known for either not spotting people  I know when I’m out and about or for people knowing me but my having no clue who they are.  To be honest, that second one tends to happen a lot – as a CAB adviser I’m often the only person their someone deals with (plus I stand out because of my wheelchair) but if I’m doing drop ins I can see up to four people in a day.

For slightly over two months my parents (mostly my Dad) were coming in twice a day to do personal care tasks related to some treatment for my lymphoedema.  However on Tuesday this week a care agency finally took over so I’ve been having carers again.

Which is horrible. Because I don’t like being tied to a schedule etc. But nice because so far I’ve got on well with the carers I’ve had and haven’t had any problems. And also great because my parents are really good at supporting me and I appreciated them doing it but my god I think we were all getting a bit frustrated with each other and ground down by it and it was just nice to get a bit of independence back and go several days without seeing each other.

The carers all had to be trained in how to do my care because although they’ve all done compression before, no one from the agency had done compression wraps. And also they needed to be signed off by my lymphoedema nurse as trained in me – specific concerns etc. Because she knows my legs.

So there I was, Friday last week. Sat in one of the lymphoedema clinic rooms at The Churchill.  Lymphoedema clinic doesn’t have it’s own space so it’s squeezed into a corner of the renal unit.  It’s the smallest, hottest room ever and it has no air because it used to be a transplant room so the windows can’t be opened.   The lymphoedema nurse on one side of me and the woman from the care agency who was coordinating  sitting on the other side running down a list of names as a never ending line of carers (12 or 13 were trained) came into the room all at once “This is X, that’s Y, then so and so” etc etc.  When I described it to someone afterward I thought it was a bit like that joke where about a million clowns get out of the smallest car ever. And I said hello to the group of them then pretty much immediately forgot all the names.

I’m slowly meeting the carers and learning names but I think I’m going to spend a lot of the next few weeks looking blankly at people who know me with no clue what their name is.  Still at least they’ll be wearing a bright blue carer uniform as they do it so I won’t be wondering how I know them!